There’s an App for That

By Barby Ingle, PNN Columnist

Have you noticed that many healthcare companies, medical providers and support groups now have apps for patients?

A recent survey found that about 40% of U.S. adults use healthcare apps and 35% use wearable devices to track their fitness, sleep, diet and other health-related activities. The market for healthcare apps was estimated to be worth $10 billion in 2022 and is expected to grow to $41 billion by 2030.

There are some great “patient-centric” apps. Patient-centric or "person-centered care" means the technology approaches healthcare in a manner that directly involves patients. I have used apps to track my eating, hydration, movement, medications, sleep time and more. Some apps can also help you organize your medical care and recognize issues or changes needed in your medical records.

Patient Portal Apps

The patient portal apps I suggest below are typically set up by the provider, and then the patient can log in and check their records, set up appointments, and access other resources. There are many choices for medical providers to use for patient portals, but these seem to be the ones used the most:  

• HealthTap: This telehealth app connect patients with primary care doctors for online care. Patients can use HealthTap for checkups, prescriptions, lab tests, treatment plans, and specialist referrals. They take patients with and without insurance. Costs start as low as $15 a month, making this affordable for even those without insurance.

• MyChart: This one is my personal favorites and I use it often, as do most of my providers in Arizona. I used MyChart this morning to check on my appointments and to pay an outstanding balance. This app can also give friends and family access to your medical records if you choose. It is excellent for parents to take care of their children and other family members from one account. It will store your medical and lab records, and even some images from MRIs, x-rays, etc. There is transparency in who has accessed your medical records, so you will know which providers have this information.

• FollowMyHealth: This app allows patients to access their medical records, request prescriptions, schedule appointments, and send messages to medical providers and staff. FollowMyHealth can also connect with medical devices such as glucose, heart and blood pressure monitors, and digital scales.

Apps for General Health 

There are many apps for overall general health, with the most popular ones being Headspace, Talkspace, Doctor on Demand, Sleep Cycle, My Fitness Pal, Fooducate, Teladoc, Fitbit, Noom, mySugr, and WebMD.  I have used many of them, but I will focus on my top three:  

• Fitbit: I never considered using a Fitbit watch until I won one from the WEGO Health Awards (now Health Union). I quickly got more involved in tracking my life by using the device. I loved how it could track my movement, sleep and stress levels, and allowed me to put in notes on things such as hydration, migraines and gastrointestinal challenges. I also like Fitbit’s PurePulse, which tracks blood flow and heart rate. FitBit devices range from $80 to $300 each.

• Noom: This is a subscription-based app that helps users track their food intake and exercise. Noom uses psychology to help users develop healthy eating and physical activity habits to lose weight. It takes a lot of dedication and focus to use Noom successfully. I lost over 20 pounds using it. I am not very active physically, and they considered that in developing an individualized program for me as a chronic pain and rare disease patient. The app encourages you to think about food differently and change your eating habits so your body works better for you. The average subscription is $60 monthly.  

• Sleep Cycle: This app tracks and analyzes your sleeping patterns. It was helpful for me to take sleep data from the app to my primary care provider so he could better understand why I have trouble sleeping. I do not sleep consistently through the night, especially on high-pain days. It’s a good tool to figure out why you are struggling to sleep and how pain is affecting your internal clock or waking you up. The Sleep Cycle app is free to download, but a premium subscription costs $40 per year. I used the free accessible portions of the app at no cost.

Chronic Pain Apps

There are many apps that can help a patient track their pain levels, types of pain, whether treatment options are helping or hurting, and more. I used to do this the old-fashioned way with a journal, but having digital data to break it down scientifically for my providers was helpful once I started using pain-tracking apps. I have tried a few and heard others find them helpful as well.  

• PainChek: This app uses artificial intelligence (AI) and facial expressions to assess pain in people who cannot reliably communicate their pain levels, such as those with dementia or young children. PainChek uses a smartphone camera to analyze a person's face. The AI system then automatically recognizes and documents facial movements that indicate pain. It’s more of an objective tool for me, since I can speak about my pain, but for those who are voiceless, it could help their daily life and individualize their care. 

• Vivify:  This is a 28-day program for people with chronic back or neck pain that includes pain education, meditation, exercises, and guided walks through an app or website connection. Vivify also monitors patients remotely, allowing providers to create and manage wellness programs for their patients. Although the goal is to “overcome or remove chronic pain entirely,” I see this app as more of a tool for people to assist in their daily activities and motivate them to move.

• My Pain Diary:  This pain-tracking app reminds me of when I used to manually keep track of my pain before apps were available. It gives patients a way to document and track their pain triggers and symptoms. You can also use the data to print detailed reports that are easy to share with your providers. I like the color-coded calendar, graphs and searchable history. The app looks at the data and sees trends you may not notice yourself. The Gold Edition of My Pain Diary costs just $5.

• PainScale: This app was recommended to me by a friend. PainScale is made by Boston Scientific and helps users track their pain, suggests treatment options, and generate reports to providers. It can also provide information from the Mayo Clinic, WebMD and other trusted pain resources to help patients manage chronic pain triggers. This app is free to download.  

The apps mentioned above are some of the most used and trusted apps by patients and providers. Patient-centric apps have become an essential part of the healthcare industry. As technology and AI continue to advance, we can expect to see more of these innovative patient apps in the future.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and the founder and former President of the International Pain Foundation. You can follow Barby at www.barbyingle.com. 

U.S. Healthcare System Isn’t Ready for Surge of Disabled Seniors

By Judith Graham, KFF Health News

The number of older adults with disabilities — difficulty with walking, seeing, hearing, memory, cognition, or performing daily tasks such as bathing or using the bathroom — will soar in the decades ahead, as baby boomers enter their 70s, 80s, and 90s.

But the health care system isn’t ready to address their needs.

That became painfully obvious during the covid-19 pandemic, when older adults with disabilities had trouble getting treatments and hundreds of thousands died. Now, the Department of Health and Human Services and the National Institutes of Health are targeting some failures that led to those problems.

One initiative strengthens access to medical treatments, equipment, and web-based programs for people with disabilities. The other recognizes that people with disabilities, including older adults, are a separate population with special health concerns that need more research and attention.

Lisa Iezzoni, 69, a professor at Harvard Medical School who has lived with multiple sclerosis since her early 20s and is widely considered the godmother of research on disability, called the developments “an important attempt to make health care more equitable for people with disabilities.”

“For too long, medical providers have failed to address change in society, changes in technology, and changes in the kind of assistance that people need,” she said.

Among Iezzoni’s notable findings published in recent years:

Most doctors are biased: In survey results published in 2021, 82% of physicians admitted they believed people with significant disabilities have a worse quality of life than those without impairments. Only 57% said they welcomed disabled patients.

“It’s shocking that so many physicians say they don’t want to care for these patients,” said Eric Campbell, a co-author of the study and professor of medicine at the University of Colorado.

While the findings apply to disabled people of all ages, a larger proportion of older adults live with disabilities than younger age groups. About one-third of people 65 and older — nearly 19 million seniors — have a disability, according to the Institute on Disability at the University of New Hampshire.

Doctors don’t understand their responsibilities: In 2022, Iezzoni, Campbell, and colleagues reported that 36% of physicians had little to no knowledge of their responsibilities under the 1990 Americans With Disabilities Act, indicating a concerning lack of training. The ADA requires medical practices to provide equal access to people with disabilities and accommodate disability-related needs.

Among the practical consequences: Few clinics have height-adjustable tables or mechanical lifts that enable people who are frail or use wheelchairs to receive thorough medical examinations. Only a small number have scales to weigh patients in wheelchairs. And most diagnostic imaging equipment can’t be used by people with serious mobility limitations.

Iezzoni has experienced these issues directly. She relies on a wheelchair and can’t transfer to a fixed-height exam table. She told me she hasn’t been weighed in years.

Among the medical consequences: People with disabilities receive less preventive care and suffer from poorer health than other people, as well as more coexisting medical conditions. Physicians too often rely on incomplete information in making recommendations. There are more barriers to treatment and patients are less satisfied with the care they do get.

Discrimination in Healthcare

Egregiously, during the pandemic, when crisis standards of care were developed, people with disabilities and older adults were deemed low priorities. These standards were meant to ration care, when necessary, given shortages of respirators and other potentially lifesaving interventions.

There’s no starker example of the deleterious confluence of bias against seniors and people with disabilities. Unfortunately, older adults with disabilities routinely encounter these twinned types of discrimination when seeking medical care.

Such discrimination would be explicitly banned under a rule proposed by HHS in September. For the first time in 50 years, it would update Section 504 of the Rehabilitation Act of 1973, a landmark statute that helped establish civil rights for people with disabilities.

The new rule sets specific, enforceable standards for accessible equipment, including exam tables, scales, and diagnostic equipment. And it requires that electronic medical records, medical apps, and websites be made usable for people with various impairments and prohibits treatment policies based on stereotypes about people with disabilities, such as covid-era crisis standards of care.

“This will make a really big difference to disabled people of all ages, especially older adults,” said Alison Barkoff, who heads the HHS Administration for Community Living. She expects the rule to be finalized this year, with provisions related to medical equipment going into effect in 2026. Medical providers will bear extra costs associated with compliance.

Also in September, NIH designated people with disabilities as a population with health disparities that deserves further attention. This makes a new funding stream available and “should spur data collection that allows us to look with greater precision at the barriers and structural issues that have held people with disabilities back,” said Bonnielin Swenor, director of the Johns Hopkins University Disability Health Research Center.

One important barrier for older adults: Unlike younger adults with disabilities, many seniors with impairments don’t identify themselves as disabled.

“Before my mom died in October 2019, she became blind from macular degeneration and deaf from hereditary hearing loss. But she would never say she was disabled,” Iezzoni said.

Similarly, older adults who can’t walk after a stroke or because of severe osteoarthritis generally think of themselves as having a medical condition, not a disability.

Meanwhile, seniors haven’t been well integrated into the disability rights movement, which has been led by young and middle-aged adults. They typically don’t join disability-oriented communities that offer support from people with similar experiences. And they don’t ask for accommodations they might be entitled to under the ADA or the 1973 Rehabilitation Act.

Many seniors don’t even realize they have rights under these laws, Swenor said. “We need to think more inclusively about people with disabilities and ensure that older adults are fully included at this really important moment of change.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

It’s Not Urgent and They Don’t Care

By Mia Maysack, PNN Columnist

There are no words to convey the extent that I, along with so many others, have endured medical trauma. It’s even more impossible for us to get those who haven't to understand what it's like or the toll that it takes.

A loved one of mine had an injury not too long ago that required a small dose of medical hoop jumping. Just the tip of the broken-healthcare-system-iceberg was enough to leave a lasting impression on them, to the extent they still haven't stopped complaining about it.

But when I attempted to express my own fresh experience with said iceberg, this same person described me as "too sensitive." That is dreadfully inaccurate, especially when you consider I've lived this way for over two decades and they had one adverse experience.

My aim is not to belittle or attempt competitive victimization. I understand how health problems impact us on different levels and in various ways. I simply find the lack of empathy -- yet the simultaneous expectation of it -- to be painfully fascinating.

Within the last few weeks, I've been hospitalized multiple times, essentially back-to-back for the same issue. That's part of what being chronically ill looks like. The difference between these recent visits, as opposed to all the others, is the spite I feel for providers who are supposed to be working for me.

I currently don’t have a primary care provider, so my only option when I have an urgent need is to go to a hospital emergency department. I was in one recently at two o’clock in the morning, freezing on a cot in an isolated exam room.

A nurse came in for the rundown as to why I was there, followed by a brief appearance from a doctor who didn't make eye contact or even face me. He kept his back turned while working on a computer.

The nurse proceeded to speak about me and my situation with Doctor Awesome, as if I was not even there. I interrupted their conversation, because I’ve already endured enough lack of bedside manner and respectfully expressed my concerns and wishes.  I asked for an exam and tests to ensure my medical issue wasn’t progressing, I also needed a prescription to relieve side effects from a medicine I was taking to manage my complications.

After laying all this out in a concise, professional manner, Dr. Awesome finally decides to turn around to face me and dryly asks, “So what brings you in tonight?”

Stunned, I politely responded that I’d previously been to this ER and was advised to return if needed. His reply was that my requests are more of a “clinic thing” and “weren’t necessary.” He then dismissed himself and I did not see him again for the hours I was left alone there. He did not come back to check on me before discharge or bother to report the results of my testing. No one did.

An assistant I hadn’t seen before eventually popped in and provided more warmth than anyone else I’d encountered, just by saying, “Awww, you do not look like you feel very well.” 

I thanked her for the acknowledgement and asked for an exam from anybody who was qualified -- it certainly didn’t need to be Dr. Awesome. She was appalled that I had to ask and left promptly to flag someone down.

So now another person I had never met and who didn’t bother introducing themselves, came in and spent less than a minute with me before they left.

At a different point in my journey, this sort of encounter would’ve completely shattered me, because of how low and how long I’ve been knocked down by those entrusted to aid in healing

Those days are over. Today, I’ll stop at nothing to pursue and obtain what’s in my best interests. Instead of feeling depleted after mistreatment like this, I internalize it as empowerment. I’ve made the decision to give up on them instead of myself, and to continue battling for the sake of my life quality. Even if that means fighting against the harm that they vowed not to inflict in the first place. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

How Technology Could Improve Healthcare in Underserved Communities

By Barby Ingle, PNN Columnist 

This year I was fortunate to visit all 15 counties in Arizona, from large cities and rural areas to those considered “frontier” and tribal reservations. I talked to patients, providers and caregivers about the stress points in their access to healthcare. I was in towns with no EMS, no hospital, and no specialists.

Seeing these disparities in healthcare closeup was an eye-opener for me. Imagine being injured or needing surgery, and you must take a helicopter to get immediate care. It’s like living on another planet.  

We can ensure that underserved communities have equal access to healthcare services, regardless of location, by providing remote and rural areas with access to telemedicine. Although the ability to access the internet is still difficult in some areas, services like Elon Musk's Star Link are being utilized to improve healthcare no matter where you live. 

With the recent pandemic, we were able to utilize telemedicine more often and see advancements in digital health solutions. Healthcare professionals can now remotely diagnose, treat and monitor patients from a distance. But will relaxed telehealth rules continue in the same form now that the pandemic has ended? Many of the details are still being worked out.

Mobile applications and wearable devices enable patients to monitor their vital signs and share the data with providers, allowing for remote monitoring and proactive intervention. They can also empower patients to more closely monitor their own health, receive medical advice, and manage chronic conditions from their homes.

With the increased availability of internet connectivity and mobile networks, technology has the potential to revolutionize healthcare delivery and improve health outcomes in remote and underserved regions. Several steps can be taken to address the digital divide in healthcare between urban and rural areas.

First, it is crucial to educate individuals about the benefits of technology and digital health tools. Technology can reduce transportation barriers, provide on-demand health advice, and minimize the risk of exposure to infectious diseases by enabling patients to stay at home.

Second, partnerships between stakeholders, such as academia, the private sector and government can help narrow the digital divide by leveraging resources to place healthcare technology where it is most needed. By building awareness, partnerships and targeting resources, it will be possible to bridge the digital divide and ensure that all communities have access to healthcare technology.

Here are some specific steps that can be taken:

• Conduct a comprehensive needs assessment in underserved communities to understand their unique healthcare challenges, cultural context and technological requirements. A needs assessment can involve surveys, interviews and focus group discussions with community members, healthcare providers and other stakeholders.

• Engage community members, healthcare professionals, and technology experts in a co-design approach. This means collaborating with the community to design and develop healthcare technology solutions that align with its needs, preferences and capabilities.  

• Adopt a user-centered design approach to make sure healthcare technology is user friendly.  Involve people from underserved communities in testing and interface design to ensure the technology is accessible, culturally appropriate and easy to operate.

• Consider the affordability and sustainability of healthcare technology by addressing cost barriers. ensuring compatibility with low-resource settings, and developing tools that can operate with limited infrastructure or connectivity.

• Provide training and support for people to utilize healthcare technology effectively. The training should include digital literacy programs, capacity-building workshops, and ongoing technical assistance.  

By involving underserved communities in the design process, healthcare technology can be tailored to their specific needs, leading to increased adoption and improved healthcare outcomes. It is crucial to prioritize the needs of these communities to ensure that they are included in the design and development of healthcare technology. By doing so, we can create more effective and sustainable solutions that genuinely address the healthcare challenges faced by underserved communities.

I am grateful for the opportunity to talk to patients, providers and caregivers in Arizona, thanks to a grant from HealtheVoices, Respond & Rescue, KB Companies and the International Pain Foundation. I look forward to continuing to gather feedback from underserved communities nationwide. By listening to patients and understanding their unique healthcare challenges, we can work towards creating meaningful solutions that improve access to care and overall health outcomes. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. You can follow Barby at www.barbyingle.com. 

ChatGPT Is Replacing Dr. Google

By Andrew Leonard, KFF Health News

As a fourth-year ophthalmology resident at Emory University School of Medicine, Riley Lyons’ biggest responsibilities include triage: When a patient comes in with an eye-related complaint, Lyons must make an immediate assessment of its urgency.

He often finds patients have already turned to “Dr. Google.” Online, Lyons said, they are likely to find that “any number of terrible things could be going on based on the symptoms that they’re experiencing.”

So, when two of Lyons’ fellow ophthalmologists at Emory came to him and suggested evaluating the accuracy of the AI chatbot ChatGPT in diagnosing eye-related complaints, he jumped at the chance.

In June, Lyons and his colleagues reported in medRxiv, an online publisher of health science preprints, that ChatGPT compared quite well to human doctors who reviewed the same symptoms — and performed vastly better than the symptom checker on the popular health website WebMD.

And despite the much-publicized “hallucination” problem known to afflict ChatGPT — its habit of occasionally making outright false statements — the Emory study reported that the most recent version of ChatGPT made zero “grossly inaccurate” statements when presented with a standard set of eye complaints.

The relative proficiency of ChatGPT, which debuted in November 2022, was a surprise to Lyons and his co-authors. The artificial intelligence engine “is definitely an improvement over just putting something into a Google search bar and seeing what you find,” said co-author Nieraj Jain, an assistant professor at the Emory Eye Center who specializes in vitreoretinal surgery and disease.

But the findings underscore a challenge facing the health care industry as it assesses the promise and pitfalls of generative AI, the type of artificial intelligence used by ChatGPT: The accuracy of chatbot-delivered medical information may represent an improvement over Dr. Google, but there are still many questions about how to integrate this new technology into health care systems with the same safeguards historically applied to the introduction of new drugs or medical devices.

The smooth syntax, authoritative tone, and dexterity of generative AI have drawn extraordinary attention from all sectors of society, with some comparing its future impact to that of the internet itself. In health care, companies are working feverishly to implement generative AI in areas such as radiology and medical records.

When it comes to consumer chatbots, though, there is still caution, even though the technology is already widely available — and better than many alternatives. Many doctors believe AI-based medical tools should undergo an approval process similar to the FDA’s regime for drugs, but that would be years away. It’s unclear how such a regime might apply to general-purpose AIs like ChatGPT.

“There’s no question we have issues with access to care, and whether or not it is a good idea to deploy ChatGPT to cover the holes or fill the gaps in access, it’s going to happen and it’s happening already,” said Jain. “People have already discovered its utility. So, we need to understand the potential advantages and the pitfalls.”

The Emory study is not alone in ratifying the relative accuracy of the new generation of AI chatbots. A report published in Nature in early July by a group led by Google computer scientists said answers generated by Med-PaLM, an AI chatbot the company built specifically for medical use, “compare favorably with answers given by clinicians.”

AI may also have better bedside manner. Another study, published in April by researchers from the University of California-San Diego and other institutions, even noted that health care professionals rated ChatGPT answers as more empathetic than responses from human doctors.

Indeed, a number of companies are exploring how chatbots could be used for mental health therapy, and some investors in the companies are betting that healthy people might also enjoy chatting and even bonding with an AI “friend.” The company behind Replika, one of the most advanced of that genre, markets its chatbot as, “The AI companion who cares. Always here to listen and talk. Always on your side.”

“We need physicians to start realizing that these new tools are here to stay and they’re offering new capabilities both to physicians and patients,” said James Benoit, an AI consultant. While a postdoctoral fellow in nursing at the University of Alberta in Canada, he published a study in February reporting that ChatGPT significantly outperformed online symptom checkers in evaluating a set of medical scenarios. “They are accurate enough at this point to start meriting some consideration,” he said.

A ’Band-Aid’ Solution

Still, even the researchers who have demonstrated ChatGPT’s relative reliability are cautious about recommending that patients put their full trust in the current state of AI. For many medical professionals, AI chatbots are an invitation to trouble: They cite a host of issues relating to privacy, safety, bias, liability, transparency, and the current absence of regulatory oversight.

The proposition that AI should be embraced because it represents a marginal improvement over Dr. Google is unconvincing, these critics say.

“That’s a little bit of a disappointing bar to set, isn’t it?” said Mason Marks, a professor and MD who specializes in health law at Florida State University. He recently wrote an opinion piece on AI chatbots and privacy in the Journal of the American Medical Association.

“I don’t know how helpful it is to say, ‘Well, let’s just throw this conversational AI on as a band-aid to make up for these deeper systemic issues,’” he said to KFF Health News.

The biggest danger, in his view, is the likelihood that market incentives will result in AI interfaces designed to steer patients to particular drugs or medical services. “Companies might want to push a particular product over another,” said Marks. “The potential for exploitation of people and the commercialization of data is unprecedented.”

OpenAI, the company that developed ChatGPT, also urged caution.

“OpenAI’s models are not fine-tuned to provide medical information,” a company spokesperson said. “You should never use our models to provide diagnostic or treatment services for serious medical conditions.”

John Ayers, a computational epidemiologist who was the lead author of the UCSD study, said that as with other medical interventions, the focus should be on patient outcomes.

“If regulators came out and said that if you want to provide patient services using a chatbot, you have to demonstrate that chatbots improve patient outcomes, then randomized controlled trials would be registered tomorrow for a host of outcomes,” Ayers said.

He would like to see a more urgent stance from regulators.

“One hundred million people have ChatGPT on their phone,” said Ayers, “and are asking questions right now. People are going to use chatbots with or without us.”

At present, though, there are few signs that rigorous testing of AIs for safety and effectiveness is imminent. In May, Robert Califf, the commissioner of the FDA, described “the regulation of large language models as critical to our future,” but aside from recommending that regulators be “nimble” in their approach, he offered few details.

In the meantime, the race is on. In July, The Wall Street Journal reported that the Mayo Clinic was partnering with Google to integrate the Med-PaLM 2 chatbot into its system. In June, WebMD announced it was partnering with a Pasadena, California-based startup, HIA Technologies Inc., to provide interactive “digital health assistants.” And the ongoing integration of AI into both Microsoft’s Bing and Google Search suggests that Dr. Google is already well on its way to being replaced by Dr. Chatbot.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

The Healthcare System Is Sick, How Could It Ever Heal Us?

By Mia Maysack, PNN Columnist

As a person who has required ample medical attention throughout my life, a constant part of the never-ending struggle for treatment is finding a provider that’s worth-a-damn to administer quality healthcare.

In childhood, I was fortunate to have one practitioner who treated every member of my family. Although most of it was an excruciating trial and error process, I can at least say they tried. When she retired, for continuity’s sake I gravitated toward someone else in the same medical practice.

By then my initial condition (chronic head pain) had not only become more complicated, but I was also battling another diagnosis (fibromyalgia) -- one that the new provider did not seem to take seriously. I chose to dismiss myself from the practice.

At that point, I became more conscious about the sort of doctor I was seeking, so I spent hours researching every clinic in my surrounding area and reviewing doctors’ bios. It was imperative that whoever I chose possess some sort of background or special interest in pain. 

I found a candidate I was so excited about that I left in happy tears after the first appointment. Unfortunately, that did not last long. On the next visit, I was diagnosed with my second round of Covid-19 and they proceeded to blame my chronic fatigue, joint pain and compromised mobility on the coronavirus -- as opposed to the fibromyalgia I’d already been diagnosed with years before the pandemic.

I shrugged it off as a misunderstanding, and assumed they must have meant the exacerbation of my fibromyalgia symptoms was caused by Covid.  

At appointment number three, we discussed preventative screenings due to some issues relating to potential hereditary concerns. After some urging, they explained the process of going in for testing, assured me I’d be contacted by qualified personnel, and guaranteed that I’d receive a direct message from them personally once all this was set in motion.

My only job was to wait, so I did. And I continued to wait. A month later, I’m still waiting.

Of course, I realize I’m not the only patient in the universe. As a retired healthcare worker, I understand the burnout so many providers must be experiencing after the last 3 years.  I recognize the shortages and feel privileged to have any sort of access. That being said, over the last two months at least two members of the pain community have taken their own lives. This is an example of what led them there. 

I vowed this was going to be the final disappointment that I am willing to accept from the healthcare system. I am paying more for medical insurance than I ever have, but receive the least amount of aid.

Given that previous failures are what led me to explore more holistic methods, I do not reside in woo-woo land. Concepts like breath work and herbs felt a bit degrading and insulting at first, but then I decided to set my reluctance aside, remembering how lost just about everything I tried up to then had left me. I reflected on the fact that I almost didn’t survive long enough to even consider something different. 

I’d never suggest that natural treatments will cure whatever horrendous illness a person may be enduring, but I’ll point out that many holistic remedies go back thousands of years. Ideas that were once dismissed, such as gut health being correlated to mental well-being; inflammation being the main culprit in overall sickness; oral hygiene (or lack thereof) directly impacting the heart; and how exercise improves mood and health are now widely accepted as mainstream.

Some of these ideas have gained traction, but utilizing things like plants won’t ever be fully encouraged or supported because it takes money away from Big Pharma – which ironically produces medication that is often derived from natural sources as well.

All of this is an open invitation to explore different ways to care for ourselves. We can remain distraught over our lack of support or we can be empowered by seeking out what we can do, as opposed to what they’ll “allow.”

I don't know about you, but continuing to put the quality of my life in the hands of those who repeatedly demonstrate their lack of concern and who are in the business of profiting off sickness is a death wish. The healthcare system is not only guilty of this, but sick itself. How could it ever heal us?

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

Nearly Half of Adults Think U.S. Healthcare System Is Failing

By Pat Anson, PNN Editor

Almost half of American adults (44%) give the U.S. healthcare system poor or failing grades, according to a new Gallup survey that found most respondents concerned about rising medical costs and growing healthcare inequality. Overall, the healthcare system was given a barely passing grade of C-minus.

"After years of higher prices, growing inequities, skipping treatments, getting sicker, or borrowing money to pay medical bills, it's no wonder so many Americans view the health system so poorly," said Timothy Lash, President of West Health, a group of healthcare non-profits that commissioned the survey.

The survey of nearly 5,600 Americans in all 50 states was conducted in June, with a nationally representative sample reflecting racial and ethnic backgrounds.

The worst overall grade on the healthcare report card – a D-minus – was given to the cost of care. One in four adults (26%) did not seek treatment due to cost in the last three months; while one in three (35%) are concerned they will be unable to afford healthcare in the next 12 months.  

Healthcare in America Report Card

source: west health-Gallup

The affordability issue is worse for those living with chronic health conditions. About 1 in 5 skipped care to pay for other household expenses, compared to about one in eight of those without chronic conditions.

“When members of my family have needed surgeries or medications [they] have to really consider how much medical debt they’re willing to go into. Our healthcare system forces us to try and make calculations between financial security and health just because of how expensive things are, and that’s even with health insurance, so I can’t imagine if you didn’t have health insurance how fraught that would be,” said survey participant Stef Schloo, 28, who lives in Pennsylvania

“I am single and so all of that falls down on me. And the only thing that would concern me is if I really developed a major health situation or, God forbid, if I was in a major accident or had to have long-term care, that’s a great concern to me,” said Patricia Slough, 67, who lives in Massachusetts.

Quality of care was the only aspect of the healthcare system that received more positive than negative marks, although it was still only able to earn an overall grade of C-plus. Women were less likely to give good grades for quality than men (38% vs. 57%); and Black and Hispanic Americans were also less likely to give a good grade for quality than the general population (36% each vs. 47%).

“You can have some of the best doctors in the world practicing here. I’m not saying that other countries don’t have great doctors, but I think our healthcare professionals can be second to none depending on where you go in America,” said Andrew Kerner, 30, who lives in North Carolina.

Healthcare Access and Equity

The grades for access to care and equitable care also broke down along racial lines. Two-thirds of Black Americans (66%) and Asian Americans (64%) selected a grade of D or F for health equity, which is the ability of every person to get quality care regardless of race and ethnicity. By comparison, Hispanic Americans (55%) and White Americans (53%) gave a poor or failing grade to equity,

Women, Blacks, Hispanics and Asian Americans were also more critical when it came to access to care. More than 40% in each of these groups gave access D’s and F’s, compared to about a third of White Americans and men.

“For the richest country on earth I think we have the most deplorable healthcare system... due to its inequity, mainly due to the way it all depends on how much money somebody has whether they get good healthcare or not,” said Anne Courtney Davis, 71, who lives in Ohio.

The survey also found that most younger and middle-aged adults are worried that Medicare and Social Security will not be available to them when they become eligible. That sentiment cuts across political lines, with 71% of Democrats, 66% of independents and 62% of Republicans worried or extremely worried about not having access to Medicare. When it comes to Social Security, there is even more agreement — 77% of Democrats, 75% of independents and 73% of Republicans are worried it won’t be there for them when they grow older.

Under an 11-point plan by Sen. Rick Scott (R-FL), chair of the National Republican Senatorial Committee, funding for Social Security, Medicare and other so-called entitlements would have to be put to a vote in Congress every five years.

“When I witness these individuals say that Medicare should be renewed every five years, it kind of makes me nervous [it’s] not going to be there for individuals when we get older,” said Nick Lembo, 27, of Indiana. “That’s startling to me because you should want to take care of those who are older than you because eventually... you’re going to be at that age.”

Ageism in Healthcare: ‘They Treat Me Like I’m Old and Stupid’

By Judith Graham, Kaiser Health News

Joanne Whitney, 84, a retired associate clinical professor of pharmacy at the University of California-San Francisco, often feels devalued when interacting with health care providers.

There was the time several years ago when she told an emergency room doctor that the antibiotic he wanted to prescribe wouldn’t counteract the kind of urinary tract infection she had. He wouldn’t listen, even when she mentioned her professional credentials. She asked to see someone else, to no avail.

“I was ignored and finally I gave up,” said Whitney, who has survived lung cancer and cancer of the urethra and depends on a special catheter to drain urine from her bladder. An outpatient renal service later changed the prescription.

Then, earlier this year, Whitney landed in the same emergency room, screaming in pain, with another urinary tract infection and a severe anal fissure. When she asked for Dilaudid, a powerful narcotic that had helped her before, a young physician told her, “We don’t give out opioids to people who seek them. Let’s just see what Tylenol does.”

Whitney said her pain continued unabated for eight hours.

“I think the fact I was a woman of 84, alone, was important,” she told me. “When older people come in like that, they don’t get the same level of commitment to do something to rectify the situation. It’s like ‘Oh, here’s an old person with pain. Well, that happens a lot to older people.’”

Whitney’s experiences speak to ageism in health care settings, a long-standing problem that’s getting new attention during the covid pandemic, which has killed more than half a million Americans age 65 and older.

Ageism occurs when people face stereotypes, prejudice or discrimination because of their age. The assumption that all older people are frail and helpless is a common, incorrect stereotype. Prejudice can consist of feelings such as “older people are unpleasant and difficult to deal with.” Discrimination is evident when older adults’ needs aren’t recognized and respected or when they’re treated less favorably than younger people.

In health care settings, ageism can be explicit. An example: plans for rationing medical care (“crisis standards of care”) that specify treating younger adults before older adults. Embedded in these standards, now being implemented by hospitals in Idaho and parts of Alaska and Montana, is a value judgment: Young peoples’ lives are worth more because they presumably have more years left to live.

Justice in Aging, a legal advocacy group, filed a civil rights complaint with the U.S. Department of Health and Human Services in September, charging that Idaho’s crisis standards of care are ageist and asking for an investigation.

‘They Don’t Respect You’

In other instances, ageism is implicit. Dr. Julie Silverstein, president of the Atlantic division of Oak Street Health, which operates more than 100 primary care centers for low-income seniors in 18 states, gives an example of ageism: doctors assuming older patients who talk slowly are cognitively compromised and unable to relate their medical concerns. If that happens, a physician may fail to involve a patient in medical decision-making, potentially compromising care, Silverstein said.

Emogene Stamper, 91, of the Bronx in New York City, was sent to an under-resourced nursing home after becoming ill with covid in March. “It was like a dungeon,” she remembered, “and they didn’t lift a finger to do a thing for me.” The assumption that older people aren’t resilient and can’t recover from illness is implicitly ageist.

Stamper’s son fought to have his mother admitted to an inpatient rehabilitation hospital where she could receive intensive therapy. “When I got there, the doctor said to my son, ‘Oh, your mother is 90,’ like he was kind of surprised, and my son said, “You don’t know my mother. You don’t know this 90-year-old,” Stamper told me. “That lets you know how disposable they feel you are once you become a certain age.”

At the end of the summer, when Stamper was hospitalized for an abdominal problem, a nurse and nursing assistant came to her room with papers for her to sign. “Oh, you can write!” Stamper said the nurse exclaimed loudly when she penned her signature. “They were so shocked that I was alert, it was insulting. They don’t respect you.”

Nearly 20% of Americans age 50 and older say they have experienced discrimination in health care settings, which can result in inappropriate or inadequate care, according to a 2015 report. One study estimates that the annual health cost of ageism in America, including over- and undertreatment of common medical conditions, totals $63 billion.

Nubia Escobar, 75, who emigrated from Colombia nearly 50 years ago, wishes doctors would spend more time listening to older patients’ concerns. This became an urgent issue two years ago when her longtime cardiologist in New York City retired to Florida and a new physician had trouble controlling her hypertension.

Alarmed that she might faint or fall because her blood pressure was so low, Escobar sought a second opinion. That cardiologist “rushed me — he didn’t ask many questions and he didn’t listen. He was sitting there talking to and looking at my daughter,” she said.

It was Veronica Escobar, an elder law attorney, who accompanied her mother to that appointment. She remembers the doctor being abrupt and constantly interrupting her mother. “I didn’t like how he treated her, and I could see the anger on my mother’s face,” she told me. Nubia Escobar has since seen a geriatrician who concluded she was overmedicated.

The geriatrician “was patient,” Nubia Escobar told me. “How can I put it? She gave me the feeling she was thinking all the time what could be better for me.”

Pat Bailey, 63, gets little of that kind of consideration in the Los Angeles County, California, nursing home where she’s lived for five years since having a massive stroke and several subsequent heart attacks.

“When I ask questions, they treat me like I’m old and stupid and they don’t answer,” she told me in a telephone conversation

“When I tell them what hurts, they just ignore it or tell me it’s not time for a pain pill.”

— Nursing home resident

One nursing home resident in every five has persistent pain, studies have found, and a significant number don’t get adequate treatment. Bailey, whose left side is paralyzed, said she’s among them. “When I tell them what hurts, they just ignore it or tell me it’s not time for a pain pill,” she complained.

Most of the time, Bailey feels like “I’m invisible” and like she’s seen as “a slug in a bed, not a real person.” Only one nurse regularly talks to her and makes her feel she cares about Bailey’s well-being.

“Just because I’m not walking and doing anything for myself doesn’t mean I’m not alive. I’m dying inside, but I’m still alive,” she told me.

Ed Palent, 88, and his wife, Sandy, 89, of Denver, similarly felt discouraged when they saw a new doctor after their long-standing physician retired. “They went for an annual checkup and all this doctor wanted them to do was ask about how they wanted to die and get them to sign all kinds of forms,” said their daughter Shelli Bischoff, who discussed her parents’ experiences with their permission.

“They were very upset and told him, ‘We don’t want to talk about this,’ but he wouldn’t let up. They wanted a doctor who would help them live, not figure out how they’re going to die.”

The Palents didn’t return and instead joined another medical practice, where a young doctor barely looked at them after conducting cursory examinations, they said. That physician failed to identify a dangerous staphylococcus bacterial infection on Ed’s arm, which was later diagnosed by a dermatologist. Again, the couple felt overlooked, and they left.

Now they’re with a concierge physician’s practice that has made a sustained effort to get to know them. “It’s the opposite of ageism: It’s ‘We care about you and our job is to help you be as healthy as possible for as long as possible,’” Bischoff said. “It’s a shame this is so hard to find.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Why President Biden Must Act on Stem Cells

By A. Rahman Ford, PNN Columnist

In a recent Forbes article, Jake Becraft argues that biomedical manufacturing must receive similar federal investment as technology infrastructure if all Americans are to have equitable access to emerging medical technologies like stem cell therapy.

Becraft notes that -- unlike the rollout of 5G wireless technology, which received substantial public and private investment -- healthcare distribution bottlenecks have received much less attention.

 “If 70% of Americans should have access to 5G, why shouldn’t they also have access to live-saving therapeutics?” asks Becraft, who is the founder and CEO of Strand Therapeutics. “What good is gene therapy to cure blindness if only those with an extra $850,000 in their pocket and home near an urban center can access it?

“If we invest in the fair and equitable distribution of life-saving therapeutics across the country, and not just in the medical hubs of major cities, we could make cell and gene therapies as accessible as we have aimed to make 5G. Cures shouldn’t exist only for the privileged.”

For Becraft, true next-generation health access requires a revolutionizing and re-imagining of healthcare manufacturing and delivery, which would consequently speed the development of cell therapies.

A Broken Stem Cell Infrastructure

Becraft’s argument cuts to the heart of the stem cell accessibility divide, which is especially true with regard to autologous stem cells that are derived from a patient’s own body fat, bone marrow and other tissues.

Harvesting, processing and administering autologous stem cells is relatively simple, cheap and can be done in one day.  Clinicians around the world have been using these therapies to treat or even cure autoimmune diseases and orthopedic problems that are often poorly treated with conventional medical modalities,

But autologous stem cells are currently heavily regulated in the U.S. because the Food and Drug Administration considers a person’s own stem cells to be “drugs” and thus subject to the long, arduous and expensive clinical trial process.

Other countries have more relaxed stem cell regulations. This means that professional athletes and wealthy people can simply fly to Europe or Columbia to receive potentially life-saving therapy. Meanwhile, the average American – many of whom are financially devastated by COVID-19 – is left to languish and suffer.

Clearly, the incrementalism and gradualism that has for too long pervaded and permeated medical technological progress must give way to thoughtful, purposeful and conscious revolutionary reconsideration.

A ‘New Deal’ for Stem Cells

Up to this point in his nascent administration, President Biden has not made stem cell accessibility and affordability a priority. Yes, there are several clinical trials underway for stem cell candidates to treat the symptoms of COVID-19. And, to the FDA’s credit, these trials are being expedited.

But thick federal bureaucratic fog still stifles the commercialization of emerging stem cell modalities that Americans in pain so desperately need. The FDA has yet to approve a single stem cell product as a treatment for arthritis or any orthopedic condition.

Almost one year ago, I wrote that then FDA Commissioner Stephen Hahn had the opportunity to implement a stem cell “New Deal” that would provide much-needed clarity to the regulatory landscape by vesting the states with primary authority over autologous stem cells.

The “New Deal” baton has now been passed from the Trump administration to President Biden, who can help lead us the finish line of stem cell accessibility and affordability. His administration has an opportunity to make good on its pledge to do right by the American citizenry it has pledged to serve. President Biden, the American people are counting on you.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The Gaslighting of Pain

By Ann Marie Gaudon, PNN Columnist

It’s become a buzzword. “Gaslighting” is a term used to describe the repeated denial of someone’s reality in an attempt to invalidate them. Its origins can be found in a misogynistic 1944 film showcasing a husband trying to convince his wife that she is insane.

To be clear, gaslighting is a form of emotional abuse and is not exclusive to romantic relationships. This attempt to manipulate a person’s reality is systemic and can be seen in social media, politics, cable news and even healthcare. When a medical professional invalidates, dismisses or even leads a patient to question their own thoughts and experiences, that is traumatic and abusive.

It is hardly news that women are more often told than men that their pain and other symptoms are emotionally-based and psychogenic: not real. Years ago, I attended a lecture given by a young woman detailing her experience with significant knee pain. She had seen several doctors to no avail; she was told the pain was all in her head. One doctor said the cause of her pain was due to “wearing her jeans too tightly and this is a common problem with teenage girls.”

She wondered out loud if this would have been her diagnosis if she were a male teenager. Eventually she did obtain a correct diagnosis for her knee pain which was osteosarcoma – the very same cancer that Canadian athlete and national hero Terry Fox succumbed to.

 A 2015 study interviewed women who had been hospitalized due to a heart attack but were reluctant to seek medical care, citing anxiety about “being perceived as complaining about minor concerns” and “feeling rebuffed or treated with disrespect.”

Since being diagnosed and treated for the female-only disease of “hysteria” in the 19th century, women’s emotions continue to be used as the cause for all that ails them. This inherent gender bias in healthcare is another form of gaslighting.

“We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t,” Linda Blount, president of the Black Women’s Health Imperative, told BBC Future. “Their bias absolutely makes its way into the exam room.”

Your chances of being subjected to medical gaslighting increase if you are not white, cisgender or able-bodied -- essentially any marginalized group. However, do not be misled into thinking that all white males will be cared for with dignity and medical acuity. I have had conversations with men who have been dismissed time and again, and had their substantial suffering completely invalidated with the likes of “that [diagnosis] would never bother anyone.” Or they cannot even get a diagnosis and so are labelled as malingerers.  

‘You’re Making This Up’

At times, I am the only person in a patient’s life who actually has validated their pain, because their family does not believe them either. “You’re making this up” or “You’re not getting better because you don’t want to get better” are common themes told to my victimized clients. I watch as their teary eyes fluctuate hurriedly from boring into mine to staring down at the floor as they question their own sanity and if their pain is indeed real.

What happens next can lead to disastrous results. When physicians inappropriately conclude that a patient’s symptoms are all in their head, they delay a correct diagnosis – just like the young woman with knee pain. This can be especially dangerous for patients with rare diseases who already wait longer to be diagnosed as it is. According to a survey of 12,000 European patients, receiving a psychological misdiagnosis can make a proper diagnosis of a rare disease take up to 14 times longer.

The pain patients in my practice (as well as myself) have been told it’s just normal aches and pains, there’s nothing wrong with you, condescended to, yelled at, disbelieved, laughed at, mocked, called names, and dismissed in all manners of arrogance and ignorance.

We’re on the cusp of 2021 and I am still telling my pain patients not to go to any appointment alone because that makes you even more vulnerable to mistreatment. Another person in the room with you can temper abusive treatment by being there as a witness. No one suffering should have to go to any lengths to receive the care they deserve. However, that is reality.

We’ve come too far just to lie down and accept medical gaslighting. Do what you can to defeat this. Find a medical provider that you can connect with; someone who listens, is honest, and frank with you. I have had the privilege of having one physician who completely fits the bill and am now searching for the next.

Become your own advocate. Do not put up with someone who is condescending, arrogant, or mistreating you – fire this person. You and your health need to be taken seriously. Watch for biases and do report a gaslighting doctor. Go to the clinical supervisor, board of the hospital, and the regulating college or agency. Be direct and honest about how you were treated and demand they take action.

There is always a legal option as well if you were harmed physically and/or mentally by the grievous actions of a gaslighting physician. Whatever decision you make, above all else, do not accept this abuse. We must all speak up and speak out!

“Nothing strengthens authority so much as silence.”
Leonardo da Vinci

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

How to Appeal a Denied Health Insurance Claim

By Barby Ingle, PNN columnist

Most pain patients rely on their healthcare providers to appeal insurance company denial of care decisions for them. Some providers are now charging fees to do the appeal paperwork for a patient.

I have found that when I handled the appeal myself, I am often able to get coverage for what I needed and in a timelier manner. I get that this is a daunting process. Many insurers seem to deny coverage and then wait for the appeal. Only about 20% of us follow through on the appeals for a variety of reasons. But it can be done.

At the end of this article is a sample of the letter I send to my insurance company when I run into a situation where the prior authorization has either taken too long (more than a few days) or has been denied.

I start by including copies of my medical records that pertain to why I need a procedure, durable medical equipment or medication. I have kept all of my medical records going back to 2002 in 3-inch binders. I now have 10 binders full, and have them organized by provider and date of service. Keeping good medical records is key to filing an appeal, so you don’t have to start from scratch.  

It can be very helpful if you also attach 3-5 clinical studies that show the effectiveness of what you are requesting working for others with your condition. Try to use studies completed within the past 5 years and with an N of at least 500 (number of participants). Two places where you can look up studies are ClinicalTrials.gov and MediFind.

I know that finding a study can be quite tough for those with ultra-rare and rare medical conditions. If you fall into that category, mention in your letter that the treatment may still be worth a shot and save you from future medical bills and procedures – and help the insurance company as well.

Here’s a sample letter to use when appealing:

Date

Name

Insurance Company Name

Address

City, State ZIP

Re: Patient's Name, Type of Coverage, Group number/Policy number

Dear (contact person at insurance company),

Please accept this letter as my appeal to (insurer’s name) decision to deny coverage for (state the name of the specific procedure denied). It is my understanding based on your letter of denial dated (insert date) that this procedure has been denied because:

(Quote the specific reason for the denial stated in denial letter)

I was diagnosed with (disease) on (date). Currently Dr. (name) believes that I will significantly benefit from (state procedure name). Please see the enclosed letter from Dr. (name) that discusses my medical history in more detail.

I believe that I am attaching additional information that you did not have at the time of your initial review. I have also included with this letter, a letter from Dr. (name) from (name of treating facility). Dr. (name) is a specialist in (name of specialty). (His/her) letter discusses the procedure in more detail. Also included are additional medical records and several journal articles explaining the procedure and the expected results.

Based on this information, I am asking that you reconsider your previous decision and allow coverage for the procedure Dr. (name) outlines in his letter. The treatment is scheduled to begin on (date). Should you require additional information, please do not hesitate to contact me at (phone number). I look forward to hearing from you in the near future.

Sincerely,

Your name

I want you to have more concrete chances to get the care you need covered. I know that it will take work and won’t always be easy. It will take energy, which most of us already have challenges with.

I like to think about my future when I am in the middle of the appeal process. What would getting this insurance coverage mean to me? More life? A better life? Then it is worth it for me.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.  

Healthcare Is a Human Right That We Deserve

By Jennifer Kain Kilgore, PNN columnist

I shouldn’t have to write this. But here I am because of headlines like these:

“FTC Refunds Almost $3.9 Million to Purchasers of Deceptively Advertised Quell Wearable Pain-Relief Device”

My body went numb after reading that. The Quell, which I wore for four years, that I blogged about, that I recommended to friends and family? That Quell?

The Federal Trade Commission slapped parent company NeuroMetrix for deceptive advertising. Specifically, the company was cited for claiming the Quell works throughout the whole body and not just where it’s worn.

“NeuroMetrix settled the case – without admitting or denying the allegations – for $4 million. The company also agreed to stop claiming that Quell provides relief for chronic or severe pain beyond the knee area where the device is worn,” PNN reported.

Soon enough I was receiving texts -- “Is this true?” “Does it not work?”

It worked for me, but that’s not why I’m writing this. My testimonial is still and will remain on NeuroMetrix’s website. The company didn’t ask me to come to their defense. Despite the bad press, that gadget worked for me.

NEUROMETRIX IMAGE

Getting a $50 refund from NeuroMetrix in my PayPal account, though? The company’s silence and tacit admission made a helpless rage boil inside where anger has been simmering for weeks and months and years.

It made me as angry as when desperate pain patients called my law office, asking if I would draft legislation or talk sense to their doctors. Or when a genuinely good product came on the market but took advantage of customers. Or when the Sackler family didn’t go to prison after their pharmaceuticals created the conditions for the national opioid epidemic to truly explode. That bubbling anger began to rise.

Where should I direct this rage? At the callers? At the makers of the SpineGym, who took their crowdsourced money and failed to deliver on their promises? At the Sacklers? No, of course not. It’s not about them. My anger is bigger than that.

I shouldn’t have to write a reaction piece about the FTC’s decision. I shouldn’t have to draft laws to change a healthcare system in which pain patients are discounted, dismissed, and even overlooked.  Sometimes our limitations and physical pain prevent us from seeking the help we need.  

I shouldn’t have had to write for Pain News Network in the first place, though I’m thankful for the opportunity to do so. I became a columnist in order to try all the gadgets claiming to cure back and neck pain. If my doctors wouldn’t help me, I would help myself.

And there it is.

A record-breaking number of citizens have already voted. Despite their overwhelming voices, a Supreme Court justice was just appointed whose legal interpretation could dismantle the Affordable Care Act, which is on the Supreme Court Docket on November 10, just seven days after the most important election in history.

If you’re reading this, health insurance is crucially important to you or someone you love. Right now, our president’s legal team is in court attempting to kill the ACA without any kind of replacement during a global pandemic that has killed over 231,000 Americans.

But that’s not why I’m writing this.

I used to blog about my journey through the healthcare system. By the time I’d graduated from the Quell to an implanted spinal cord stimulator (which also works), I’d exhausted myself. It was time to focus on finally, finally healing. You know, being a normal person again.

The spinal cord stimulator -- controversial for sure, and not a surefire bet -- ended up working beyond my wildest dreams. Even though I’ve pulled on wires and scar tissue, my life has been partially restored. My doctor said the Quell was a good indicator as to whether a SCS would even work. If the Quell helped, so would a spinal cord stimulator.  

Before the SCS, I wasn’t able to consistently work as an attorney; I could barely leave my house. I was dependent on my husband for everything from insurance to carrying bags of groceries.

After the SCS, I can do yoga and pilates. I can lift laundry baskets. I can go to work and sit through a two-hour deposition. I can be an actual person again.

But that’s not why I’m writing this.

I shouldn’t have spent sixteen years of my life begging for help. I shouldn’t have to become a patient advocate and a writer for an online publication because I couldn’t otherwise afford pain-relief devices.

I shouldn’t have to write this.

I shouldn’t have to fight my insurance company to get my treatments covered. I shouldn’t have to stagger bill payments to various hospitals so as not to overdraft my account. I shouldn’t be paying for my spinal cord stimulator more than a year after its implantation.

I shouldn’t -- we shouldn’t -- have to do these things. We shouldn’t have to fight so hard to live in what’s supposedly the greatest country on earth.  What’s so great about living in fear? Fear of the unknown, the future, access to healthcare resources, and effective treatments? I’ve lived in fear for long enough, and so have you.

I shouldn’t be here. You shouldn’t be here, reading this. This website shouldn’t exist, and we shouldn’t have to fight so hard. But one in five Americans adults has chronic pain, and something must be done.

Healthcare is a human right, and we deserve it.  So VOTE.  Protect your loved ones by protecting healthcare.

Jennifer Kain Kilgore is an associate attorney at MALIS|LAW, working in civil litigation. She has chronic back and neck pain after two car accidents. 

Avoiding Medical Care During Pandemic Could Mean Life or Death

By John Glionna, Kaiser Health News

These days, Los Angeles acting teacher Deryn Warren balances her pain with her fear. She’s a bladder cancer patient who broke her wrist in November. She still needs physical therapy for her wrist, and she’s months late for a cancer follow-up.

But Warren won’t go near a hospital, even though she says her wrist hurts every day.

“If I go back to the hospital, I’ll get COVID. Hospitals are full of COVID people,” says Warren, a former film director.

“Doctors say, ‘Come back for therapy,’ and my answer is, ‘No, thank you.’”

Many, many patients like Warren are shunning hospitals and clinics. The coronavirus has so diminished trust in the U.S. medical system that even people with obstructed bowels, chest pain and stroke symptoms are ignoring danger signs and staying out of the emergency room, with potentially mortal consequences.

A study by the Centers for Disease Control and Prevention found that emergency room visits nationwide fell 42% in April, from a mean of 2.1 million a week to 1.2 million, compared with the same period in 2019.

A Harris poll on behalf of the American Heart Association found roughly 1 in 4 adults experiencing a heart attack or stroke would rather stay at home than risk getting infected with the coronavirus at the hospital. These concerns are higher in Black (33%) and Hispanic (41%) populations, said Dr. Mitchell Elkind, president of the American Heart Association and a professor of neurology and epidemiology at Columbia University.

Perhaps even more worrisome is the drastic falloff of routine screening, especially in regions hit hard by the virus. Models created by the medical research company IQVIA predict delayed diagnoses of an estimated 36,000 breast cancers and 19,000 colorectal cancers due to COVID-19’s scrambling of medical care.

At Hoag Memorial Hospital Presbyterian in Newport Beach, California, mammograms have dropped as much as 90% during the pandemic. “When you see only 10% of possible patients, you’re not going to spot that woman with early-stage breast cancer who needs a follow-up biopsy,” said Dr. Burton Eisenberg, executive medical director of the Hoag Family Cancer Institute.

Before the epidemic, Eisenberg saw five melanoma patients a week. He hasn’t seen any in the past month. “There’s going to be a lag time before we see the results of all this missed care,” he said. “In two or three years, we’re going to see a spike in breast cancer in Orange County, and we’ll know why,” he said.

Dr. Farzad Mostashari, former national coordinator for health information technology at the U.S. Department of Health and Human Services, agreed. “There will be consequences for deferring chronic disease management,” he said.

“Patients with untreated high blood pressure, heart and lung and kidney diseases are all likely to experience a slow deterioration. Missed mammograms, people keeping up with blood pressure control — there’s no question this will all cause problems.”

In addition to fear? Changes in the health care system have prevented some from getting needed care.

Many medical offices have remained closed during the pandemic, delaying timely patient testing and treatment. Other sick patients lost their company-sponsored health insurance during virus-related job layoffs and are reluctant to seek care, according to a study by the Urban Institute.

A study by the American Cancer Society’s Cancer Action Network found that 79% of cancer patients in treatment had experienced delays in care, including 17% who saw delays in chemotherapy or radiation therapy.

“Many screening facilities were shuttered, while people were afraid to go to the ones that were open for fear of contracting COVID,” said Dr. William Cance, chief medical and scientific officer for the American Cancer Society.

Falling Through the Cracks

And then there are patients who have fallen through the cracks because of the medical system’s fixation on COVID-19.

Dimitri Timm, a 43-year-old loan officer from Watsonville, California, began feeling stomach pain in mid-June. He called his doctor, who suspected the coronavirus and directed Timm to an urgent care facility that handled suspected COVID patients.

But that office was closed for the day. When he was finally examined the following afternoon, Timm learned his appendix had burst. “If my burst appendix had become septic, I could have died,” he said.

The degree to which non-COVID patients are falling through the cracks may vary by region. Doctors in Northern California, whose hospitals haven’t yet seen an overwhelming surge of COVID-19 cases, have continued to see other patients, said Dr. Robert Harrington, chairman of the Stanford University Department of Medicine and outgoing president of the American Heart Association. Non-COVID issues were more likely to have been missed in, say, New York during the April wave, he said.

The American College of Cardiology and American Heart Association have launched campaigns to get patients to seek urgent care and continue routine appointments.

The impact of delayed care might be felt this winter if a renewed crush of COVID-19 cases collides with flu season, overwhelming the system in what CDC Director Robert Redfield has predicted will be “one of the most difficult times that we’ve experienced in American public health.”

The health care system’s ability to handle it all is “going to be tested,” said Anthony Wright, executive director of Health Access California, an advocacy group.

‘Sabbatical from Bad Habits’

But some patients who stay at home may actually be avoiding doctors because they don’t need care. Yale University cardiologist and researcher Dr. Harlan Krumholz believes the pandemic could be reducing stress for some heart patients, thus reducing heart attacks and strokes.

“After the nation shut down, the air was cleaner, the roads were less trafficked. And so, paradoxically, people say they were experiencing less stress in the pandemic, not more,” said Krumholz, who wrote an April op-ed in The New York Times headlined “Where Have All the Heart Attacks Gone?” “While sheltering in place, they were eating healthier, changing lifestyles and bad behaviors,” he said.

At least some medical experts agree.

“The shutdown may have provided a sabbatical for our bad habits,” said Dr. Jeremy Faust, a physician in the division of health policy and public health at Boston’s Brigham and Women’s Hospital. “We’re making so many changes to our lives, and that includes heart patients. If you go to a restaurant three times a week or more, do you realize how much butter you’re eating?”

While some patients may be benefiting from a COVID-19 change of regimen, many people have urgent and undeniable medical needs. And some are pressing through their fear of the virus to seek care, after balancing the risks and benefits.

In March, when the virus took hold, Kate Stuhr-Mack was undergoing a clinical trial at Hoag for her stage 4 ovarian cancer, which had recurred after a nine-month relapse.

Members of her online support group considered staying away from the facility, afraid of contracting the virus. But Stuhr-Mack, 69, a child psychologist, had no choice: To stay in the trial, she had to keep her regular outpatient chemotherapy appointments.

“We all make choices, so you have to be philosophical,” she said. “And I thought it was far more risky not to get my cancer treatment than face the off-chance I’d contract COVID on some elevator.”

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

Chronic Pain Patients ‘Hanging on by a Thread’ During Coronavirus Lockdown

By Pat Anson, PNN Editor

People with chronic pain and chronic illness are staying at home, practicing social distancing and wearing masks to protect themselves from the coronavirus. But after weeks of isolation, many chronically ill patients are feeling anxious and lonely, and worried about issues that healthy people are less concerned about, like losing access to medication and healthcare.

“Some medications have been unavailable or on back order. Doctors have been unavailable; everything has been unavailable. I'm hanging on by a thread,” one patient told us.  

“It’s very difficult for a single, senior person living alone. Can go days without talking or seeing anyone. I suffer with depression anyway, but this has really increased it so much. It’s scary to think that people in this group could be sick or dead for days before being found. It’s incredibly lonely,” another person said.

“It has only exacerbated my anxiety and pain to a breaking point. I don’t know how long before I completely break down mentally,” said another.

“Not only do I worry about running out of medication, but each time I have to go to the pharmacy for various medications, I am exposing myself to others which could cause me to get the virus,” a patient said.

“I am amazed at how many people just blow off social distancing and even the seriousness of coronavirus itself,” another person said. “On the other hand, I've been heartened by the amazing compassion by others for those who cannot go out, are front line workers, and for those who have the virus.” 

Those are some of the responses we received in an online survey of 2,221 people with chronic pain or chronic illness conducted by Pain News Network, the International Pain Foundation and the Chronic Pain Association of Canada from April 6-20. The vast majority of respondents live in the United States or Canada.

Over half (58%) say they are extremely or very worried about the coronavirus, while less than 5% are not worried and believe the crisis is overblown.

The vast majority report they are self-isolating at home or under quarantine (89%), practicing social distancing (98%) and wearing protective gear like masks (73%).

There’s good reason for their caution. One in four are age 65 or older, and over half (57%) have been diagnosed with a weakened immune system. Both groups are at high risk for severe symptoms and death if they become infected with COVID-19.

HOW WORRIED ARE YOU ABOUT THE CORONAVIRUS?

“Severe untreated pain has demolished my immunity; it shows on a blood test. I'm bedridden in assisted living and I am severely immuno-compromised,” one patient told us. “I am supposed to have a biopsy, they think I have uterine cancer, but I won't get treatment because I can't have pain meds. Everyone in nursing homes is vulnerable.” 

“I’ve had COVID symptoms since March 16 and still unable to get tested. My greatest fear is whether or not it compromised my immune system even more, and that I might not be able to return to work part time when this is over,” another patient said. “Since I live alone, disability is not enough to cover my payments so I will be at risk for losing my home.”

“If I get this virus, it’s a death sentence. So I stay worried, my sleep is compromised, and my pain levels are higher,” said another.

What specifically are people worried about?  It runs the gamut from from financial problems to running out of food to not knowing when the crisis will end. Their top concern is a loved one catching the virus.

What Do You Worry About?

• 71% A loved one becoming infected

• 69% Going to a hospital or doctor’s office

• 67% Catching the virus

• 64% Not knowing when this will end

• 62% Losing access to medications

• 50% Not being able to see family and friends

• 49% Not being able to see my doctor

• 49% Visiting locations where I might become infected

• 42% Mental health

• 42% Running out of food or essential supplies

• 37% Financial problems

One reason financial problems may rank low as a concern is that nearly 80 percent of respondents are retired, disabled or were no longer working. Their financial situation hasn’t changed much due to the lockdown. About 15% are still working, while only 5% have been furloughed or laid off.

‘Stuck at Home Without Pain Relief’

One of the biggest worries of respondents is having a health problem and needing to go to a hospital or doctor’s office, where they risk exposure to people who may be infected with COVID-19. As a result, over 70 percent say they have cancelled or postponed a medical appointment. About the same number are using telehealth to connect with their providers remotely.

Some patients are having problems getting their prescriptions refilled. And many healthcare services deemed non-essential, such as physical therapy, massage, chiropractic care and elective surgeries, have been cancelled.

“I am very upset to have had my shoulder surgery delayed again. I have already waited over 2 years and now this! My pain level is something terrible,” one patient told us.  

“I've lost non-pharmaceutical pain management; the essential physical therapies and procedures have been postponed. It is called ‘non-life saving’ but I've already lost my life due to disability from severe chronic immobilizing spinal nerve damage,” said another.

“Lupus medication Plaquenil is being used to treat Covid-19. A bit scary for those of us needing access to this medication daily for lupus,” said a patient, one of several with lupus who have that concern.

“I'm very worried about not being able to get ANY of my medications. Already last week, a non-pain related prescription wasn't available at my regular pharmacy. I had to go to another pharmacy to have it filled because my regular pharmacy doesn't know when they'd get the medicine again.”  

“My physician decided to stop prescribing my anxiety and muscle spasm medication now. I’m really having a terrible time functioning. My chiropractor will not see me as I had a fever at my last appointment,” a woman said. “I’m stuck at home without adequate pain relief and have a special needs daughter. None of my doctors understands my situation here and it’s beyond frustrating.”  

Testing and PPE

Another frustration is the lack of testing and shortages of protective gear such as face masks and gloves. Like many healthcare workers, nearly two-thirds (64%) of chronically ill patients say it is difficult or very difficult to get personal protective equipment, commonly known as PPE. And only about 3.5% of this highly vulnerable population has even been tested for the virus.

“Due to the fact that I have an autoimmune disorder, rheumatoid arthritis, I am trying especially hard to stay home,” said a patient. “There are no face masks, hand sanitizer or gloves available for sale in this area.”

“It is despicable to me that we do not have enough PPE and testing. We all knew there would be a pandemic, just a matter of when. From the feds down to local healthcare, that did not stockpile PPE or plan how they would do testing. It is a horrific failure of epic proportion,” another patient said.

Testing for coronavirus antibodies is less off a concern than PPE. A large majority (72%) don’t feel a need to be tested. Only about one in four are worried they may be infected (24%) and would like to take a test to confirm it (25%).

‘The Plague of Many Generations’

IS IT EASY OR DIFFICULT TO GET PPE?

Among our survey population, only 16 people say they’ve actually been diagnosed with COVID-19. It’s been a difficult, life-changing experience for those who have.

“I've been stigmatized on social media for being outside (no one was around) for having COVID-19. I've been shamed and treated like a leper,” said one coronavirus survivor.

“I had it in January before the news broke. My mom, who was very ill, got it and passed away from it. My dad and sister also had it and survived. I am on my second bout, which compared to the first is nothing,” said another survivor.

“I believe this virus has been here since December. My husband and both sons were very ill at Christmastime into January and I took ill in February,” said a woman who tested positive for COVID-19.

“It’s been absolutely terrorizing to experience such a thing! It’s difficult to understand how this could happen or where this virus came from. It’s the plague of many generations!” said another coronavirus survivor.

Tomorrow we’ll look at how people feel about the government’s handling of the coronavirus outbreak and whether now is a good time to start ending the lockdown.

This Film Is Far from a Joke

By Dr. Lynn Webster, PNN Columnist

Good films entertain. Great films inspire. Sometimes, they even galvanize people to create a social movement against injustice.

I recently saw one of those rare movies that fall into the category of movies that can inspire: Joker.

The film moved me, and I think it has the capacity to raise the consciousness of other viewers, too. This is why I was surprised to read extremely negative critical reviews about Joker.

The Guardian dismissed the movie as being “shallow,” while the The New Yorker described the film as “numbing emptiness.” The New York Times labeled it as an “empty, foggy exercise in second-hand style and second-rate philosophizing.”

These reviewers all missed the point.

To me, Joker contains substance and in-depth messages about the shortcomings of our health care system, and the part that society's cruelty plays in the development of a psychopath. The gravity of the film caught me off guard.

I was expecting to see just another comic book/adventure movie, but this was far more than that. The film clearly shows a pattern of childhood trauma, repeated shame, income disparity, lack of health care, discrimination, corruption, and rebellion. In other words, Joker reflects real life through excellent and Oscar-nominated acting and production.

Joker demonstrates what happens if you take two people and put them in two different environments. You shower one person with money, love and other advantages, while you deprive the other of all those things.

WARNER BROS.

The movie shows that the result is the creation of one hero and one anti-hero.

Batman's nemesis, the Joker, didn't start off as a bad person. He once was a child named Arthur Fleck.

Fleck’s story begins with the physical abuse he suffered as a child at the hands of a harsh, rigid father and an enabling mother with serious mental health problems. She alleges that she had an affair with the wealthy businessman and politician Thomas Wayne (father of Bruce Wayne, who eventually becomes Batman).

Fleck believes his mother had the affair and, therefore, he is owed respect and support from Thomas Wayne. However, a callous and cruel man causes Fleck to doubt his parentage. Fleck learns from this man that he may not be Wayne’s child, and that his mother may have adopted him and kept the truth hidden from him. This deceit causes him unbearable shame.

In a startling contrast of good vs. evil, Bruce Wayne is blessed with a happy childhood, while Fleck suffers layer upon layer of abuse. His rage builds throughout the movie with recurring episodes of humiliation.

Fleck develops a neurologic disorder called Pseudobulbar Affect, a condition of involuntary, uncontrollable laughter and crying. The condition sets him up to be repeatedly isolated and ridiculed.

Fleck comes to see the inequity of his upbringing. Because the man he still believes may be his father withholds economic and emotional support from him, he experiences escalating anger and mistrust of politicians and the wealthy.

Fleck holds it together until his health care benefits are cut off and he can no longer see his therapist or receive medication. Then he snaps and becomes society's worst nightmare: the Joker.

Batman fans know the rest of the plot. So does anyone who follows the news.

What the Joker experiences, and the consequences of those misfortunes, happen all too frequently in real life.

Society's failure to provide treatment for people with mental illness, and the cruelty with which we shun them, create the seeds of school shootings, terrorism, mass murders and other horrible crimes.

People aren't necessarily born with a greater capacity for hatred than others, nor are they necessarily destined to become criminals. They may be born with mental illness, but it is often environmental factors — including society's lack of empathy, and its failure to treat them humanely and compassionately — that put them over the edge.

My hope is that audiences will see that a "joker" is made, not born. Some of the same ingredients that create a psychopath may also sow the seeds for drug abuse and many other societal pathologies.

Joker is not shallow or empty. It is a reflection of what society experiences when people receive too little empathy, too little love and too little support.

Lynn R. Webster, MD, is a vice president of scientific affairs for PRA Health Sciences and consults with the pharmaceutical industry. He is author of the award-winning book, “The Painful Truth,” and co-producer of the documentary, “It Hurts Until You Die.” You can find Lynn on Twitter: @LynnRWebsterMD.

Opinions expressed here are those of the author alone and do not reflect the views or policy of PRA Health Sciences.