Insurers Can Cause Pain Too

By Victoria Reed, PNN Columnist

Having chronic pain or illness means that you likely take multiple medications and go to the doctor often. That means dealing with your insurance carrier to get claims filed and paid.

One of the medications that I use for my rheumatoid arthritis is quite expensive. In fact, many of the biologics commonly prescribed for RA and other autoimmune conditions are very pricey, costing thousands of dollars a month depending on insurance. Before starting a biologic, it usually needs to be pre-approved by your insurance company.

This pre-approval process can delay or even stall treatment altogether.  With RA, insurers usually require that you to try a particular biologic or disease modifying anti-rheumatic drug (DMARD) before you are approved for a more expensive one. This red tape can and does cause harm to patients as they wait for the insurance review, which can take up to three or four weeks.

During that time, doctors can treat patients with steroids or pain medications, which can help keep symptoms at bay. However, the biologics are primarily what keeps the disease from causing destructive and permanent damage.

Insurance companies are businesses, like any other, and their goal is to make money. But as they look for cheaper medication options and create red tape, the delay can literally leave you in more pain while you wait for a decision. Unfortunately, insurers control the purse strings and sometimes they seem to have more say in a patient’s care than doctors themselves.

Recently, I tried to complete a refill of my biologic medication, Actemra, through the specialty pharmacy that I use. I ordered it online and waited for the email confirmation of shipping, but after a few days I noticed that it didn’t arrive. I contacted the pharmacy’s customer service department to inquire about its status and was told that the required pre-approval had not been done by my doctor’s office: No medication would be shipped until that paperwork was completed.

I then contacted my doctor’s office to advise them of the delay and requested that they complete the required paperwork. Then I patiently waited. After nearly two weeks of being without my medication, the shipment finally arrived. Two weeks can seem like a lifetime if you’re in severe pain!

This pre-approval requirement makes no sense to me, as I’ve been taking Actemra for many years. RA is a lifelong condition that does not go away or get better on its own. Medications to control the condition are usually taken for the duration of your life. So why would my doctor need to submit pre-approval paperwork every six months?                   

Money! It’s as simple as that. Insurers look for ways to delay or avoid paying for an expensive medication..  

I’m sure I’m not the only one experiencing this. Cancer patients also must deal with their insurance company’s control over what drugs they can take to save their lives or improve their quality of life. My father lived with cancer for many years before he passed. Even towards the end of his life, the issue of what meds he was allowed to have was front and center, controlled and dictated by his insurer.

Patients can die because an insurance company refused to pay for a drug that they deemed too expensive. They prioritize profit over people’s lives and have far too much control over patient care.

If you find yourself in a battle with your insurance company over a medication that your doctor prescribed, you do have some options.  You don’t have to just accept a denial. Most insurers allow you to appeal an adverse decision, and sometimes they will change their minds after an appeal or receipt of additional supporting documentation.

You can also request that your doctor send a letter of medical necessity, which would document your need for the drug. In addition, you can request that the insurer do a physician level peer-to-peer review. This is a review that is used by insurance professionals to determine whether to uphold the denial of coverage for a particular medication or claim.

Sometimes utilizing these additional avenues will result in your medication being allowed. Still, any delay in treatment could be detrimental to your health or cause you additional pain while you wait through the appeal process. Some people may find it easier to just take a cheaper drug recommended by the insurer.

Chronic pain sufferers have enough to deal with on a daily basis and we don’t need the additional stress of engaging in a battle with our insurance carriers. Nor do we need unnecessary red tape delays, which are solely designed to save the insurer money.

Patients may not have the energy, time or knowledge to navigate the tricky tactics insurers use to pad their bottom line – which is where a patient advocate could help. Advocates can negotiate with the insurer on your behalf, and can also help you communicate with your medical providers and set up appointments. They can be close friends, family members, spouses or even someone from an organization, such as the Patient Advocate Foundation.

They say it takes a village to raise a child. We also need a village of resources to deal with chronic illness and all of the hassles that come with it.

Victoria Reed lives in northeast Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

No One Deserves to Suffer from Chronic Pain

By Victoria Reed, PNN Columnist

Recently I had a conversation with a family member who suffers from chronic pain. He said that he “deserves” the pain, because it resulted from certain actions and choices he made as a young person. He went on to say that my chronic pain isn’t “fair” because I did nothing to cause it.

I was astonished that he would actually feel that way. Does anyone really deserve to live a life with chronic pain? Surely, not!

He’s right in saying that I did not do anything to cause my pain. I just happen to have genetics that contribute to the development of certain illnesses, particularly the autoimmune kind. This runs strongly in my family. My sisters have multiple autoimmune illnesses, including rheumatoid arthritis (RA), lupus, type 1 diabetes and fibromyalgia. My mother suffered from untreated fibromyalgia as well. In addition, my daughter has been diagnosed with fibromyalgia.

Obviously, none of us did anything to cause our illnesses, nor the pain that comes from having them.

While this particular family member may have made some questionable choices as a teen that caused injuries and persistent pain well into adulthood, he doesn’t deserve chronic pain. It’s not uncommon for teen boys to engage in risky behavior, and I’ve told him that his pain is no less important and no more deserved than mine. 

While there can be many, many causes of chronic pain, compassion must be given to each and every patient, regardless of the cause. Life happens! Whether it’s the result of a genetic-based illness, an automobile crash or some other accident or injury, no one deserves to live in pain. Even if the incident that caused your pain was due to your own negligence or carelessness, it is still valid pain, and treatment is as justified as it is for any illness.   

RA Drug Shortage Continues 

On the flip side, I have been experiencing continued difficulty getting my RA medication. Actemra (tocilizumab) is a biologic drug that was created specifically to treat RA, and the IV form has been my mainstay treatment for many years. However, there is still a worldwide shortage of Actemra because it’s been repurposed to treat covid patients. According to a statement by Genentech, the drug’s manufacturer, there will most likely be continued shortages throughout the pandemic.  

At one point during the summer of 2021, Genentech reported a “temporary stockout” of Actemra IV in the U.S. because so much of it was being used for covid patients. During that time, I was forced to switch to a different form of treatment. But even after switching to a subcutaneous self-injection, whenever I attempted to refill my prescription, my pharmacy informed me that the medication is “long-term out of stock.”  

This formulation was not approved by the FDA’s Emergency Use Authorization to treat covid, but it appears that it is indeed being used for that purpose and is frequently unavailable to RA patients. To say that this is frustrating would be an understatement!  

While covid is no doubt a serious illness, untreated RA with its systemic inflammation is also very serious. This runaway inflammation can, and often does, do damage to the heart, lungs and eyes. Untreated and poorly treated RA is also associated with a 10 to 15 year decrease in life expectancy.   

It’s understandable why doctors are currently experimenting with older, established medications to treat covid.  Fortunately, researchers have discovered that some of these older medications have been helpful and do decrease the severity of the virus. However, existing users of any particular medication shouldn’t lose access or have their necessary prescriptions significantly delayed. RA patients are no less important than covid patients.  

Chronic illness is a common problem that affects millions of people worldwide. But depending on where you live and what your condition is, you may not receive the same level of treatment and may not be taken as seriously as you’d like. No longstanding pain should be ignored, as untreated and under-treated pain will undoubtedly lead to other problems, such as depression, anxiety and even suicide. The risk of suicide also increases when patients are forced to taper off of opioids.  

The one thing that we all have in common is that we are human beings, and no matter what the chronic pain condition is, everyone deserves to be treated humanely and compassionately, just as any animal in pain would be. Nobody ever “deserves” to suffer. 

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis. 

Another Drug Shortage Caused by Covid-19 Has Me Worried

By Victoria Reed, PNN Columnist

I recently read a news article about the Food and Drug Administration issuing an emergency use authorization for Actemra (tocilizumab) for the treatment of hospitalized covid-19 patients. The medication was originally developed as a treatment for rheumatoid arthritis (RA), one of the chronic pain conditions I live with.  

Actemra is a biologic drug that calms down overactive immune systems by blocking the interleukin-6 (IL-6) receptor. Persistent dysregulated expression of the IL-6 receptor is involved in the pathogenesis of RA and other chronic inflammatory and autoimmune diseases. It is believed that this over-activation of the IL-6 receptor is also responsible for the so-called “cytokine storm” that causes severe illness and death in covid-19 patients.

The symptoms of RA are pain, fatigue and swelling in the lining of the joints and other parts of the body, including the heart, lungs and eyes. This inflammation can lead to disability, joint destruction and cause serious damage to the lungs and heart.

I have had long-term success controlling my RA symptoms with Actemra and have been getting the drug by IV infusion monthly for about 8 years. Prior to that, I didn’t have good control with other biologic meds such as Enbrel and Orencia.

When I read that news story, I was initially only mildly concerned about Actemra becoming unavailable. Nevertheless, I contacted my doctor for confirmation that I was still on track for my upcoming monthly infusion. However, she did not and could not confirm that the medication would be available to me. Why?

Actemra has now been hijacked by doctors treating covid-19 patients, and this has created a major shortage. I have been informed that its availability for RA patients is uncertain for the foreseeable future. This is really very upsetting!

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Covid-19 patients are using up resources in hospitals across the country. The overwhelming needs of these severely ill patients are causing other patients who need surgery or have treatable illnesses to die from a lack of available resources. Hospitals in hard-hit areas are short on everything -- staff, meds, beds and time. As a result, many chronic pain patients like me are being denied the treatments that we rely on to have functional lives. I must say that this seems patently unfair.

What’s even more disconcerting is that Genentech, Actemra’s manufacturer, can’t say when the shortage will end and expects “additional intermittent periods of stockouts (lack of supply) in the months ahead, especially if the pandemic continues at the current pace.”

RA and lupus patients saw this happen earlier in the pandemic when word got out that Plaquenil (hydroxychloroquine) might help treat covid-19. That medication also became scarce and was inaccessible to patients with autoimmune conditions for a while.  

One thing for sure is we are all very tired of the covid virus and its variants. I understand that doctors and scientists are desperate to find things that work, and they want to save lives. But I rely on Actemra to help relieve my pain and fatigue and keep damaging inflammation down. It is the mainstay of my treatment.  

Due to the Actemra shortage, I may have to consider other medications that might not work as well or just wait out the shortage and hope my disease activity doesn’t become unbearable.  

If the pandemic continues, many more people are going to lose their lives from covid infections. However, all patients deserve an equal chance at receiving the care they need, including chronic pain patients. The pain community is already suffering from opioid hysteria and many of us have to fight to stay on these pain medications. We shouldn’t have to fight for our other meds too! 

RA is a serious, systemic and often misunderstood condition that can shorten a lifespan by many years if not treated aggressively and with the proper medications.  Patients sometimes go through many trials of medications before finding one that relieves symptoms and arrests disease activity.  

I truly hope this shortage is short-lived -- for myself and others like me -- who rely on Actemra to remain functional and productive.  

Victoria Reed lives in Cleveland, Ohio. She suffers from endometriosis, fibromyalgia, degenerative disc disease and rheumatoid arthritis.