For roughly half my life, I have suffered from debilitating joint pain and inflammation that left me drained, fatigued, and, eventually, struggling to walk. At first, no one knew what was wrong with me. Then I was misdiagnosed. Finally, just as I started my sophomore year in college, my doctors told me I had a severe case of rheumatoid arthritis (RA), an incurable, progressive, and ultimately crippling illness. I was forced to drop out of school for a while. For a long time I could not work full time.

That happened more than 15 years ago. Now, after three surgeries and countless medications, I am able to live what resembles a normal life. But my journey to this long-sought destination hasn’t been easy. Even though I have always had health insurance, I have nevertheless spent years battling my insurance company to get coverage for the treatments my doctors said I needed to stay as healthy as I can be.

I trust my doctors to do the right things and prescribe the medications that allow me to live with rheumatoid arthritis. My insurance companies don’t. They insist on “step therapy” instead.

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Step therapy is a practice that requires patients to first try and “fail” an insurer’s preferred treatment before being able to access the therapy their own doctors have prescribed. It’s essentially an insurer’s way of saying, “We know more about drug therapy than your doctor and we need to protect you from his or her prescribing the most expensive drug first.” The insurers’ agents who make these decisions, by the way, are not always doctors.

Step therapy once delayed my ability to get effective treatment for more than a year. As a result, the debilitating effects of my disease continued to worsen while I also suffered the side effects of a drug that did not work for me.

As is common for those diagnosed with rheumatoid arthritis, I was first prescribed methotrexate. It did nothing to stop the pain, fatigue, stiffness, and swelling my RA caused, but it did make me violently ill every time I took it, gave me terrible headaches, caused my hair to fall out, and left me with a skin condition that has never been cured. Because methotrexate didn’t ease my symptoms, I was prescribed others drugs for them, including steroids to combat the inflammation caused by RA.

My condition deteriorated so much that I had to drop out of college and move in with my parents in a different state. I was then assigned a new set of insurance agents who refused to approve the medication my doctors prescribed. I had to repeat the methotrexate “failure” all over again.

It took years before I was prescribed a biologic drug that actually helped manage my disease. The toll that time lag took on my body included (but was not limited to) needing three major surgeries on my knees.

So I can sympathize with the millions of Medicare beneficiaries currently enrolled in Medicare Advantage plans who may soon face access issues of their own because of a new policy allowing plan sponsors to implement step therapy for certain Medicare Part B drugs.

It’s a bad policy, lacking even the most basic safeguards to ensure that step therapy policies are used appropriately. It also fails to provide an accessible process for patients to get an exception to step therapy when their doctors deem it necessary.

Insurers use step therapy as a way to control costs. Requiring patients to first try alternative (meaning cheaper) therapies, they argue, cuts down on unnecessary treatments and helps lower premiums. But that line of thinking doesn’t acknowledge that no two patients are alike and that each person’s body responds to treatment in different ways. That’s why treatment must be carefully tailored to a patient’s individual conditions and needs.

Patients with rheumatoid arthritis, for example, often must try multiple drugs before finding the one that works best for them. While this trial-and-error process has long been part of health care, and is often unavoidable, step therapy unnecessarily draws out the process by forcing patients to try drugs their doctors already know will not be effective. And while patients are trying these ineffective drugs, they suffer. This can even cause permanent damage. For those of us with rheumatoid arthritis, as I can personally attest, this policy can mean irreparable joint damage.

The delays caused by step therapy, not to mention other insurance practices such as prior authorization, have forced me to make hard choices about how to get the treatment I need. I’ve split pills and rationed medications, sometimes skipping doses for a day or two. My family and I have spent hours on the phone with insurance companies — once for nearly eight hours straight — trying to get them to reverse their repeated rejections of my rheumatologist’s recommendations. My doctors have written countless formal letters on my behalf and made countless phone calls to my insurance providers. All the while, my condition worsened. For prolonged periods of time I struggled to walk because my knees were so swollen. I had to wear braces on both of my wrists. I even feared I was going to have to leave my job because the pain, fatigue, and physical restrictions were becoming so severe that I did not think I could continue to be productive.

I am not alone in my struggle with step therapy. According to a survey from the Arthritis Foundation, for which I am an advocate, more than half of all patients reported having to try two or more different drugs because of step therapy before getting the one their doctor had originally prescribed. And, like me, nearly a quarter of them had to repeat step therapy when they switched insurance plans.

In short, step therapy undermines doctors’ professional and clinical judgments in the name of protecting insurance company profits and at the expense of their patients.

Congress needs to step in and ask the Centers for Medicare and Medicaid Services to remove this dangerous policy from Medicare. I join a broad coalition of patients and health care providers in urging Congress to pressure the Trump administration to rescind this policy and ensure adequate guardrails are in place to protect patients from insurers’ overzealous use of practices like step therapy, which are designed to bolster their bottom lines at the expense of people in need of effective medical care — the people they’re meant to serve.

Elizabeth Krempley is a patient advocate for the Arthritis Foundation.

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  • I am a physician. That does not make infallible! But after years of training I believe I know something about matching a medication to the person sitting with me in the office. I know a fair amount about that person and learn more at each visit. I try to use that to match the treatment to the patient.
    When the response from the payor in essence is “use a cheaper drug”, I have to ask in addition to price, why? My years of training are now irrelevant. My patient is given another Med, which would be fine if it were not for the reason that my training and my knowledge of the patient tells me it is less likely to work, or may result in adverse events. Years of training matter not!
    We all make mistakes and occasionally the denial of the prescribed Med is appropriate, but to have that in place by a less qualified person who does not know anything of the patient frankly insulting not to me but to the training I went through.

  • I work for a company that does approvals for different treatments and yes sometimes we do require that certain things be tried first. But it also depends on your physician’s documentation and it is looked at case to case and not a one medication fits all. We try to do what is best for the member but we have guidelines to follow to follow. If you are denied a treatment that you feel benefits you then appeal the decision and usually it will be overturned. Be careful not to put all your trust in your physician but also be your own advocate. Doctor’s usually hate to see me coming because I ask questions even they cannot answer.

  • How about the insurance company’s come done on the manufacturers who make cheap useless,potentially dangerous generics. I took Lamictal generic for years, I had frequent urination so much drs. Where sure it was diabetes. Well when I was tested. That was the case. My Dr. tried me on mama brand and the frequent debilitating urination went away! Why make pills no one has acess to. Genetics just let in the fraud makers for some places. Please stop fake unaffectIve. Meds.

    • Lol oh … excuse thent po above . *I meant* I DID NOT Have diabetes and when doc. put me on name bran lamictal the frequent urination went away! It was true, my generics were causing me to pee easily 10x hour. I til I switched to a pill tats 500.00 mo.??

  • This is in reply to Jeff: IMO your portrayal of RA guidelines is a bit off base. The ACR 2016 RA guideline recommends a wide range of options (e.g., combination DMARDs, TNF inhibitors, and other biologics) based on the patient’s disease activity with the goal of achieving remission or low disease activity as quickly as possible. These recommendations for an aggressive treat to target approach (TTT) are based on results from at least 8 clinical studies (BIODAM, TRICORA, CAMARA, etc.) that have found better outcomes in RA with early and aggressive treatment. To be clear, these studies evaluated outcomes with TTT over usual care. Requiring a patient with high disease activity (which I assume the author had) to undergo step therapy puts her at risk for irreversible joint damage and disability and is not consistent with TTT which is now the standard of care in RA. Patients with RA already face many access barriers, including treatment delays because they can’t access a rheumatologist in a timely manner. Requiring a rheumatologist to use a specific drug first, rather than the full complement of available options, creates another major barrier to achieving remission. Treating RA is difficult enough already.

  • I have had RA for 20 years and had to go through many cheaper drugs to be eligible for biologics. Prednisone worked (and works) great, but has many adverse side effects including bone density loss. Enbrel worked somewhat for about 1.5 years, but lost effectiveness over time. Humira worked better, but became cost prohibitive. I gave myself Methotrexate injections while taking Humira, but had to stop as directed by a pulmonologist after having bronchitis for 4 months. I finally found that natural products work as well as or better than big Pharma drugs. The ones that worked best for me include Thunder God Vine Root (inhibits production of TNF-a), Celadrin (inhibits production of IL-6), and other natural products. Of course, natural products are not covered by insurance, but I have found they are as effective as biologics and do not have the negative side efects.

  • While I empathize with your situation, you’r interpretation of ‘step therapy’ is a bit off base. Yes insurance companies use step therapy in part to control usage of expensive drugs, but determining what the different steps should be are not random and capricious. They almost always based on national treatment guidelines which are established by various medical societies not by insurance companies. For instance in the case of RA, the guidelines call for treatments like methotrexate and steroids as 1st line treatment. Based on clinical data, these treatments have been show to work for a vast majority of patients, at least for a little while until their conditions progress. In your case they didn’t work, so you should have been moved to more aggressive therapy sooner.
    I am not trying to defend insurance companies, but the problem is more with the high cost of drugs, not with how insurance companies try to control those costs. I do think when you switched insurance companies they should have been able to take into account your past treatment history and not make you start all over again. I would actually blame your doctors for possibly not supplying the insurance company with the proof that you had already been treated with other standards of care.

    • You clearly don’t have any chronic disease. I’ve been disabled for 14 years now and can’t tell you how many times Medicare simply refused to pay for a medication my doctor, of 14 years, wanted me on. Those same medications were $500-$800 dollars a month. That’s more than half to all of my disability check. Yes, my doctor did write an appeal letter and Medicare still refused every time. Because of that I’ve had more surgeries on my back. It all comes down to what they SAY they’ll do and what they ACTUALLY do. So don’t tell me about guidelines!

  • I have a Medicare Supplemental Plan since being on SSD over 10 years ago due to an illness. Hindsight, I figured out, that if I had worked for less years and never saved any money, I could have applied for Medicaid which is the better insurance. The cost of my supplemental and prescription plan is phenomenol. I checked on the Advantage Plans this year and realized they carry an extremely high risk which is, you better not end up in the hospital, because you will not be able to afford the out of pocket cost nor does it cover other additional treatment costs that you are required to receive. You are left to research those cost because the Advantage plans are complicated and not easily understood . Certain meds on the Advantage prescription plans are not covered nor or they on the supplemental/prescription plans. I’m paying more for the insurance plans then what they are covering. Eventually I will not be able to afford Medicare and my Gap Insurance. I shouldn’t have worked therefore qualifying me for SSD/Medicare or saved at all, because if not, I would have qualified for Medicaid and received free benefits that illegal immigrants and those select people who “scam” the system receive. Save every dime because if any one of you have an unexpected permanent illness that prevents you from employment, you will lose everything you have worked for. Remember Medicare only pays 20% and not all Doctors take Medicare for all those who thinks Medicare for all is the answer. I have done my research on all the information.

  • No one is forced into step therapy. All you have to do is pay for your own medication and you can have your choice. Sure, it would be wonderful if everyone got everything “free” but it’s just not feasible. Every country with public health care has limited access and the trend is more and more limitations as the cost of “free” spirals out of control.

  • I am going thru all of this now. I cannot afford Embrel . I am on Medicare advantage plan to and they are putting me through this step procedure .

    • I’m on BCBS and going through this very thing. Next year I’ll be on Medicare, so affraid for my future. Isurance is nothing like it use to be thanks to it all being changed 8 years ago. Hope those who thought it will be so great for everyone is happy now, now you see how it is for Canda and all these other places who say they have free insurance. There is no such thing as free health. Someone is paying and those of us with a chronic disease are the ones who suffers more.

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