I Was Kicked Out of a Support Group for Having Chronic Pain

By Ann Marie Gaudon, PNN Columnist

Recently, after the death of my mother, I registered to participate in a grief support group. The group met in the evening, which is good for able-bodied day workers, but a very poor time for me as far as chronic pain goes.

After working and the efforts of the day, my body is tired and worn down; which is a terrific setting for pain and other symptoms to come visit. I knew the group’s meeting time would be difficult, but was determined to do my best – and let me be very clear, I did just that.

The problem was, I proved to be all-too-human and they proved to be all too discriminatory.

By the 6-week mark, I had missed two meetings. Both times it was due to pain. I couldn’t get in or out of my car and was in no shape to stand for two hours. The furniture was too large for me to sit in with my back against the chair and my feet on the floor. No support is a no-go for my back, so I must stand in most places I attend. It’s nobody’s fault (well, maybe furniture makers) and I’ve adapted my life to it. Last time I checked, I was 157 cm tall (5’2”) and don’t have the height to sit properly in standard-sized chairs.

Anyone who knows me well knows that I have multiple pain conditions. It all started when I was 19 years old and much more has come my way as I age.

Anyhow, back to my sins of being human. The morning after I missed the second meeting, I received a telephone call to tell me that I had missed too much time and it would have a negative effect on the group’s bonding. I could not return. That was their policy.

At the time of the call, I had just gotten out of bed, my head was brain-fogged, and I wasn’t really registering the message. It took a little bit for my brain to kick-in and realize I had been kicked out! I was hurt and angry. but mostly I really wanted to advocate for everyone in pain. So I decided to send them an email.

“By telling me I was no longer welcome, you chose not only to dismiss my grief, but also to dismiss me because I am not an able-bodied person. These dismissals are not only unkind and quite the opposite of support, but also inflict moral injury to a person who is already suffering,” I wrote in my email.

I also said that I didn’t want or expect a reply. However, someone took the time to write back an extremely ignorant and dismissive email. I would gladly share it with you, but curiously the email ends with this legal disclaimer:

“This communication may contain confidential & privileged material for the sole use of the intended recipient. Any unauthorized review, use or distribution by others is strictly prohibited. If you have received this message by mistake, please advise the sender by reply email & delete the message. Thank you.”

I was so utterly shocked at being kicked out of a “support” group for having an invisible disability that I needed to speak with someone who knows about these things. Now I really needed support!

I was grateful for the opportunity to explain my experience with Kattlynne Grant, who is working on her second Masters and a PhD in Disability Studies at Brock University in Ontario. In addition to studying disability, Ms. Grant also lives with an invisible disability. I found her to be a great support for all of us:

“Just by the fact that someone responded to you when asked not to, it seems that they were more concerned about defending themselves and not hearing you as a person,” she told me. “By telling you that this happens to everyone who misses two sessions shows they really miss the mark of the implicit bias built into that policy – where it favours a certain type of embodiment over others because it assumes/expects a ‘normal’ level of function.  It is very exclusionary to those with disabilities, as it means that those who may struggle to keep with normative embodied expectations will not have access to their services.”

Someone within the support group organization took the time to shift the blame onto me and argue that I was in the wrong for not making them aware. Aware of what, my disability? What would they have done with that information? 

We all signed an agreement that we would do our best to attend all eight sessions. I did so wholeheartedly and meant it. I was never not committed to the group.

The facilitator said they realize that sometimes “life happens” and if we must miss a session, to just call ahead and let them know, which I did.  Nobody said two strikes and you’re out – not that it would have made it right. I’m only saying this because it was not even part of the conversation.

I was wholly offended to get a finger pointed back at me with passive aggressive statements such as “all we ask for is commitment” – which is all that I gave. I felt like I had been swept back to a time when disabled people were seen as a scourge on society, with no ethical or legal rights.

It was all very upsetting and offensive. I am upset to even have to share this with you, but it is what I need to do. I am being totally honest when I tell you that I was blind-sided when I was kicked out.

Ms. Grant had more to say about to these types of experiences.

“This move of shifting blame truly exposes how deeply that the ‘ideology of ability’ is ingrained within their practices,” she said. “The marginalized are often made responsible for their own adversity and exclusion, rather than acknowledging their role in this and the need for structural change.”

The Law Commission of Ontario describes ableism this way:

“A belief system, analogous to racism, sexism, or ageism, that sees persons with disabilities as being less worthy of respect and consideration, less able to contribute and participate, and of less inherent value than others. Ableism may be conscious or unconscious, and may be embedded in institutions, systems or the broader culture of a society.” 

Here is how the Ontario Human Rights Commission defines systemic discrimination:

“Systemic or institutional discrimination consists of attitudes, patterns of behaviour, policies or practices that are part of the social or administrative structures of an organization or sector, and that create or perpetuate a position of relative disadvantage for people with disabilities. The attitudes, behaviour, policies or practices appear neutral on the surface but nevertheless have an adverse effect or exclusionary impact on people with disabilities.”

Bringing awareness to the ways that we unintentionally reinforce systems of privilege and exclusion should be important to any organization, but especially for a support group. It would be a way to reduce the pain and grief of future members, not just add to them. 

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.  

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.

Sickle Cell Patients Face Life-Threatening ER Waits

By Sara Hutchinson, KFF Health News

Heather Avant always dresses up when she goes to the emergency room.

“I’ve been conditioned to act and behave in a very specific way,” said Avant. “I try to do my hair. I make sure I shower, have nice clothes. Sometimes I put on my University of Michigan shirt.”

HEATHER AVANT

It’s a strategy to combat discrimination the 42-year-old photographer in Mesquite, Texas, has developed over a lifetime of managing her sickle cell disease, a rare blood disorder that affects an estimated 100,000 Americans.

The hereditary condition can affect a person of any race or ethnicity, but Black patients, like Avant, make up the majority of those afflicted in the U.S.

For people living with the disease, a sickle cell crisis can happen at any time. When it does, their rigid, sickle-shaped red blood cells become stuck in their blood vessels, blocking flow and causing extreme pain or breathing difficulties.

A crisis can escalate into life-threatening complications such as strokes, seizures, and sepsis.

When a pain crisis can’t be managed at home, patients head to the ER to get the high dosage of opioids they need, in addition to IVs to help with dehydration or even blood transfusions. Yet staffers in emergency departments — already overextended and grappling with nursing shortages — don’t always have experience in treating the rare disease. And many doctors, amid a still-raging opioid crisis, remain resistant to prescribing the painkillers necessary to treat sickle cell crises.

As a result, patients with sickle cell disease often face long delays before receiving essential ER care, plus discrimination and suspicion that they are seeking drugs to get high.

“I have to look like I’m not coming in here off the street looking for medication,” said Avant. “I have to put on an entire show to get you to believe that I need care.”

Long Waits

Years of research have documented the delays. A study published in 2013 found that patients seeking care from 2003 through 2008 at an ER for their sickle cell crises waited 50% longer than patients who arrived with broken legs or arms.

Another study published in 2021 found that 50% of sickle cell patients reported having to wait at least two hours before their pain was treated, despite medical guidelines recommending such patients in crisis receive their first dose of pain medication no more than 60 minutes after arriving at the ER.

Medical associations such as the American Society of Hematology, the National Heart, Lung, and Blood Institute, and the Emergency Nurses Association have established guidelines for emergency department-based care of sickle cell pain. And, in 2021, the Emergency Department Sickle Cell Care Coalition, a national collaboration of hematologists, pharmacists, and nurses, helped launch a point-of-care tool to help medical professionals manage the disease in the ER.

But patients and sickle cell experts said those best practices haven’t been widely adopted. A 2020 survey of nearly 250 emergency medicine providers found that 75% of them were unaware of the NHLBI’s recommendations, first published in 2014, yet 98% felt confident in their ability to treat patients with sickle cell disease.

Still, ER horror stories abound among adults with sickle cell disease. For Lesly Chavez, 29, a Houston hairstylist, her worst experience occurred a few years ago. She said she spent four hours in a waiting room before getting seen.

“And when they finally got to me, they told me they could help with ‘my addiction,’ but they decided that there was nothing that they could do for me,” Chavez said. “They just flat-out said no and sent me home while I was in crisis.”

Chavez said she has since avoided that hospital even though it’s 10 minutes from her home. Now she drives to an ER 30 minutes away.

Chavez, who is Hispanic, said she confronts “doubt everywhere I go” because sickle cell disease primarily affects Black Americans. (Those who are Hispanic can be of any race.)

Paula Tanabe, a professor of nursing at Duke University who has spent decades researching ways to improve care for sickle cell patients, said a confluence of factors adds to the racial bias patients may face.

“Emergency rooms are incredibly overcrowded, at rates that we have never seen before, and that’s for everyone,” said Tanabe.

‘People Are Going Uncounted’

Legislators are trying to help. A federal bill introduced in June would allocate $8.2 million annually for five years to a program that trains doctors on best practices for caring for sickle cell patients. Another, introduced this spring, would provide funding for community organizations working to spread awareness about the condition and give student loan relief to medical providers who commit to working on the disease. Some state legislatures have established sickle cell task forces to improve physician education and care coordination.

Advocates for sickle cell patients said investment in data collection to track the disease is also important. Although the Centers for Disease Control and Prevention estimates that some 100,000 Americans have it, the true number is unknown. That’s because no national system exists to collect data on sickle cell, unlike other conditions such as diabetes, cancer, and Alzheimer’s.

“I’m 32 and we’ve been saying it’s 100,000 my entire life,” said Quannecia McCruse, who co-founded the Sickle Cell Association of Houston. “I know there’s more. I know people are going uncounted.”

Eleven state-led data collection programs currently exist and, in February, the CDC opened a new grant application for additional states. Improved data would allow funding to be allocated toward the areas with the greatest need, sickle cell patient advocates said.

Texas had an opportunity to join those efforts. This spring, the state legislature passed a bill with broad bipartisan support to create a sickle cell patient registry, but Republican Gov. Greg Abbott vetoed it, saying it would compromise patient privacy.

“That was a bad excuse,” said McCruse. “We have a cancer registry already, and everyone’s information is safe. That registry would have gone a long way to help.”

While progress grinds slowly, patients like McCruse say they’re forced to balance advocating for themselves during bouts of excruciating pain against the need not to irritate or alienate hospital staffers.

“It feels like someone is taking a Taser and shocking the crap out of me. Or when it’s really bad, and it feels like shards of glass are just moving through my veins,” said the mother of two. “It’s very, very painful. And you’re telling somebody whose body is torturing them that it’s not that bad?”

Alexis Thompson, a hematologist who treats sickle cell patients at the Children’s Hospital of Philadelphia, said she works with her pediatric patients to develop self-advocacy skills. But sometimes that backfires.

“The great irony is patients who are well informed and capable of self-advocating are being accused of being manipulative, because they are capable of articulating very clearly what’s effective for them down to the name of the medication or the absolute dose,” Thompson said.

Sickle cell experts recommend that doctors adhere to a patient’s individual pain plan, if available. Thompson said those plans, which document patients’ diagnoses alongside a recommended medication and dosage, can be uploaded to online portals that patients can pull up on their cellphones when visiting an ER to verify what they need.

Patients such as Avant hope such steps can help decrease their ER waits while easing their anxiety about seeking emergency care.

“I don’t fear dying,” said Avant, “but I do fear dying in the hospital.”

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

Woman Files Civil Rights Lawsuit Over Denial of Pain Treatment

By Madora Pennington, PNN Columnist

In September of 2022, millions watched Tara Rule’s emotional video on TikTok, about a doctor who refused to give her a non-narcotic pain medication because it might cause birth defects. The doctor would not even name the drug, even though Rule told him she has no intention of having children because she has Ehler's Danlos syndrome (EDS), a genetic disorder that causes severe health issues.

The 32-year old Rule recently filed a civil rights lawsuit to better establish the illegality of refusing medical treatment to women simply because they are of childbearing age.

Rule’s fight began when neurologist Jonathan Braiman, MD, steered her away from an effective treatment for her agonizing cluster migraines, a common symptom of EDS. According to Yale Medical School, cluster headaches can hurt more than childbirth.

When Rule realized she was being discriminated against by her doctor, she surreptitiously switched on her cell phone to record their discussion, which is legal in New York state. 

Brainman can be heard in the recording asking Rule intrusive questions about her sex life, while ignoring her answers. Rule explained that she was already on a medication that can cause birth defects -- known as teratogenic drug -- and wasn't well enough to have children anyway.

Brainman patronizingly told her she might change her mind if she were to become pregnant. He recommended that she bring in her boyfriend to consent to any treatment that might cause birth defects. Rule left without getting the pain relief she needed for her migraines.

In the parking lot of Albany Medical Center, where the appointment took place, a distraught and tearful Rule made the video and posted it online. Her raw emotion and disturbing story quickly went viral, not only on social media, but in news stories.

In her lawsuit against Braiman and Albany Medical, Rule alleges she was retaliated against by the hospital system. Rule says she was ejected from an unaffiliated urgent care center because Albany Medical had told other hospitals not to treat her. She believes this was a violation of her medical privacy.  

Rule suspects she was blacklisted by other providers in her area. She tried to make an appointment with another neurologist, but was told she was “not an appropriate patient.” Her primary care provider sent a back-dated letter to Rule and her mother saying he was dismissing them as patients. That doctor gave no valid reason for the patient abandonment.

TARA RULE (TIKTOK)

Rule is on disability and lives on less than $1,000 per month. Being banned as a patient is a real hardship.

“Now I have to go to Connecticut to see physicians in a different hospital system. Or travel three and a half hours to New York City. With hotels and gas, it’s very hard. Some of these specialists outside the state are not fully covered by my insurance,” Rule said.

Traveling is made more complicated because Rule can’t stay just anywhere — she needs accessible hotel rooms. And she is accumulating thousands of dollars in debt.

After posting her video, Rule heard from many other patients who have also been discriminated against by their doctors. She felt motivated to find out what legal remedies existed.

With legal guidance, Rule wrote the civil rights complaint herself in what is known as a “federal question” lawsuit, an action that seeks to clarify a constitutional issue in US federal court. Rule has been advised that the medical care she sought does not fall under “conscience protections,” which allow doctors to refuse treatment on religious or moral grounds.  

In preparation for her lawsuit, Rule obtained her medical and insurance records, to help prove that privacy violations occurred. She discovered she had been billed for services not received, and believes her medical records were forged.

Albany Medical did not respond to a request for comment.

Rule’s lawsuit is potentially precedent-setting. It marks the first federal question case against a medical provider for refusing to provide teratogenic drugs because a woman is of “childbearing age.” Refusing to give routine medical care because a patient might get pregnant is discrimination. Patients cannot be forced into unnecessary restraints on their care.

"I am prepared for whatever happens,” says Rule, who is hopeful her lawsuit will help prevent other patients from being discriminated against by their doctors. 

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies. 

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.

Most Sickle Cell Patients Face Stigma During ER Visits

By Pat Anson, PNN Editor

Nearly two-thirds of people with sickle cell disease in the U.S. feel judged and stigmatized when they visit an emergency department due to a pain flare, according to a new survey by Health Union.

About 100,000 Americans live with sickle cell disease (SCD), a genetic disorder that mainly affects people of African or Hispanic descent. SCD causes red blood cells to form in a crescent or sickle shape, which can create blockages in blood vessels that cause intense pain.  It’s not uncommon for someone with SCD to visit an ER a few times each year due to pain or complications such as anemia, stroke, infection and organ failure.

Health Union surveyed 111 people living with SCD to share their experiences dealing with the disease and how they are perceived by healthcare professionals, coworkers, teachers, friends and family members. Most said they did not feel judged or stigmatized by others – except when dealing with ER staff.

Many felt ER staff were rude, ignorant or misinformed about sickle cell disease, didn’t take their pain seriously, and believed they were drug seekers. Nearly half of those surveyed (43%) said they avoided going to the ER because they worried that people would judge them.

“A doctor judged me during a hospitalization. He stated I wasn’t in that much pain to be using Dilaudid. He also stated I was drug seeking because a sickle cell crisis can be managed with Motrin. His statement is not true!” one participant told Health Union.

Sickle cell patients had an entirely different take on their pharmacists, hematologists and primary care providers. Over half (53%) trusted their providers and felt their primary care doctors were friendly, understanding, easy to talk to, and provided excellent care.

"Navigating the healthcare system can already be complex, but undergoing such wildly different experiences can make access to reliable, timely, effective care even more difficult for people with sickle cell disease," said Olivier Chateau, Health Union's co-founder and CEO.

The finding that many people are not happy with their pain treatment in hospitals is not unique to sickle cell patients.  A 2016 PNN survey of over 1,250 hospitalized pain patients found that most felt they were labeled as addicts or drug seekers. Over 80% believed hospital staff were not adequately trained in pain management and over half rated the quality of pain care in hospitals as poor or very poor.  

A report last year by the National Academies of Sciences, Engineering, and Medicine found that sickle cell patients often face discrimination and stigma when navigating the healthcare system. The report found that SCD received little attention from the healthcare community compared to other chronic illnesses. To get proper treatment, many sickle cell patients have to educate themselves about their disease and become their own advocates.

The Health Union survey found that nearly three out of four sickle cell patients (73%) were currently using a prescription analgesic. Many others took prescription strength NSAIDs (35%), muscle relaxants (23%) or anti-anxiety/antidepressant drugs (16%). Only 5% said they experienced an issue with substance abuse.

Does Discrimination Cause Blacks to Feel More Pain?

By Pat Anson, PNN Editor

Racial and ethnic bias is a fact of life that impacts almost every aspect of our society – and healthcare is no exception. Research has shown that African-Americans are more likely to be undertreated for pain compared to white Americans, and that blacks are less likely to be prescribed opioid pain medication than whites.

Part of that stems from a false belief that there are biological differences between blacks and whites that cause African-Americans to feel less pain.

New research published in the journal Nature Human Behaviour disputes that stereotype, suggesting that African-Americans experience more pain due to the lasting effects of discrimination and other stressful life experiences.

In a small study led by researchers at the University of Miami, 28 African-Americans, 30 Latinos and 30 whites were subjected to a series of painful heat tests on their forearms while undergoing MRI brain scans.

The African-Americans not only rated their pain more intense and unpleasant than the other two groups, but the MRI’s found that the parts of their brains that process pain signals became more active than their counterparts’ as the temperature of the heat probes increased.

“There's evidence that both the general public and clinicians believe that African Americans are less sensitive to pain than non-Hispanic whites; yet research, including our own, shows exactly the opposite." said lead author Elizabeth Losin, PhD, an assistant professor of psychology at the University of Miami.  "Minorities, particularly African Americans, actually report more pain."

Losin began her research eight years ago while at the University of Colorado, recruiting volunteers in the Denver area. In addition to the heat tests and MRI scans, all participants completed questionnaires about various aspects of their lives, including unfair social treatment, discrimination and their trust in doctors.

Using the MRI brain scans, Losin and her colleagues identified two areas of the brain, the ventral striatum and ventromedial prefrontal cortex, which responded to pain more strongly in African Americans than the other two groups. Prior research has found that these two brain regions also respond more to pain signals in chronic pain patients.

“Our findings suggest that the link between chronic pain and ethnic differences in pain sensitivity may lie in the chronic stress associated with discrimination. Discrimination has been consistently associated with chronic stress and other adverse health outcomes in AA (African Americans) and other minority groups,” Losin wrote.

“It is also plausible that the higher pain sensitivity we and others have observed in AA compared to WA (White Americans) participants may be related to previous negative experiences with medical care in particular, which are more common in AA compared to non-Hispanic WA populations.”

Previous studies have found that childhood trauma, domestic violence and other stressful life situations can also increase the likelihood of chronic pain – so this new research does not prove that discrimination alone contributes to the increased risk of pain. Nevertheless, it lays the groundwork for future studies on the relationship between pain and discrimination.

"These findings exemplify how neuroimaging is teaching us that there are multiple contributions to pain," said co-author Tor Wager, PhD, a professor of neuroscience at Dartmouth College. "We need to consider the broader psychological and cultural setting when we think about what is underlying pain and how to address it."

Losin is continuing her research by studying the relationship between patients' trust in their doctors and their experience with pain.

"It's a common misconception that any difference you see between groups of people must be an intrinsic difference, rooted in our biology. But the differences we found in this study were related to people's life experiences," she said. "It reaffirms our similarities and provides hope that racial and ethnic disparities in pain can be reduced."

Pain Clinic Settles Discrimination Case

By Pat Anson, Editor

An Indiana pain management clinic has agreed to pay $30,000 to settle a federal claim that it discriminated against a pain patient by refusing to treat him.

In an unusual twist, the discrimination case filed by the U.S. Justice Department against Pain Management Care of South Bend was not based on the man’s rights as a pain patient – but because of his HIV status. The Americans with Disabilities Act (ADA) is intended to protect all people from being discriminated against because of physical or mental disability.

According to the Justice Department, the patient was referred to Pain Management Care (PMC) in November, 2014 after the closure of another pain clinic where he had been treated. The patient sought bi-monthly cortisone injections, which he had been receiving for pain management from his previous doctor.

After sending the results of an MRI exam and other medical records to PMC, the patient received a voicemail message from a clinic employee stating that Dr. Joseph Glazier would not treat him “due to the risks involved with needles and blood due to (his) condition of being HIV positive.”    

The patient asked PMC to change its position but was still refused treatment. He was not able to find another pain management doctor willing to treat him until several months later.

“PMC’s discriminatory denial caused (the patient) to endure six months without needed pain management care and to experience emotional distress,” federal prosecutors said.

The case against PMC was filed on April 7th and quickly settled out-of-court, with Dr. Glazier agreeing to pay the patient $20,000 and a $10,000 civil penalty. PMC must also develop a non-discrimination policy, provide ADA training to its staff, and submit annual reports to the government. The consent decree still needs a judge’s approval.

PMC’s website now contains this notice: “Pain Management Care, P.C., does not discriminate on the basis of disability, including HIV. All individuals, including persons with HIV, have an equal opportunity to treatment from Pain Management Care, P.C.”

“The Justice Department is committed to eradicating discrimination resulting from the unfounded fear and dangerous stereotype that someone with HIV would pose a threat to a medical provider,” said Principal Deputy Assistant Attorney General Vanita Gupta, head of the Justice Department’s Civil Rights Division.  “Discrimination by those in the medical profession breaks a trust critical to ensuring access to appropriate treatment for all.”

This settlement is part of the department’s Barrier-Free Health Care Initiative, a partnership of the Civil Rights Division and U.S. Attorney’s Offices to target enforcement efforts on access to healthcare for individuals with disabilities. 

The Americans with Disabilities Act was signed into law by President H. W. Bush in 1990. It is intended to protect against discrimination based on “physical or mental impairment that substantially limits one or more major life activities.”

For more information on the obligations of healthcare providers under the ADA, you can call the Justice Department’s toll-free hotline at 800-514-0301. ADA complaints may be filed by email to ada.complaint@usdoj.gov or by clicking here.