Drug Pricing and the Future of Treatment for Autoimmune Patients

Drug Pricing and the Future of Treatment for Autoimmune Patients

2021 is a critical time for patients living with autoimmune disease as there have been many policies on the table this year to address issues of relevance to those living with the disease. As the Vice President of Policy at the Autoimmune Association, I’ve had the privilege to be able to advocate on behalf of patients and their loved ones living daily with autoimmune disease during this time.

My story is not much different from the many individuals I represent. While I am fortunate enough not to live without an autoimmune disease myself, I grew up with it in my family. From my earliest memories of my grandmother, I saw the devastation of rheumatoid arthritis before effective treatments were as readily available as they are today.

My grandmother was one of the most generous, strong, and cheerful individuals I’ve ever known- but she was forced to live in a power lift recliner and wheelchair for the last 20 years of her life. Her hands were drawn in and fingers unable to be used due to the disease. As she progressed into the later stages of her life, her toes and feet started to do the same as did her arms and the pain had to be managed continuously. She couldn’t participate in activities of daily living anymore and needed help with the most basic of tasks.

I remember all of these difficult things she dealt with regarding her health- but the things I remember most were her joyous laughter when I would dance by the fireplace to her favorite songs during the holidays as a child, or jump up in her chair and “go for a ride” as she pressed the recline function button. I also remember the pain and confusion of being a child and hearing that his grandmother was no longer going to be there when we visited when she passed away.

I didn’t piece together that autoimmune disease was the culprit for those foundational memories I had as a child until even months ago, more than a year after I took this position. The same might go for you. You likely have individuals very close to you that live with an autoimmune disease. There are over 100 autoimmune diseases. They have no cures, and they affect every single person in many different ways.

But while there may be no cures, there is an amazing number of therapies on the market and coming to the market for those living with autoimmune diseases. From the autoimmune diseases that may be more household names like my grandmother lived with, to even very rare autoimmune diseases- investments in research have led to promising therapies that can treat symptoms like the ones my grandmother had and can continue to help those live their daily life in good health.

But even getting access to these drugs on the market has not proved to be so easy. Patients are seeing increased out-of-pocket costs through high deductibles, coinsurance, and have even been unable to count copay assistance for their treatment toward their deductibles and out-of-pocket max.

Beyond the increased out-of-pocket costs health insurance companies are now putting on the backs of America’s individuals living with autoimmune disease, they have started to restrict access to medicines through more limited formularies and are even switching patients without the clinician or patient’s approval to a different drug that is more financially viable for their business models. These practices, along with onerous prior authorizations and step therapy policies have even forced our patient’s doctors to social media to publicly shame them into approving a life-saving treatment when all else fails.

Along with these many issues Americans face living with autoimmune disease, Congress has decided to take up the issue of lowering drug costs. This is an exciting prospect- but one that must be done in a way that ensures future investment and access to treatment for patients now. This is why we led a letter earlier this year on patient-centered drug pricing priorities for autoimmune patients that had over 60 patient group signees.

As the policies get more concrete, we are seeing promise around capping out-of-pocket costs for patients with Medicare- something we have long advocated for and something that should have been done long ago. But we are also seeing some policies that could impact the vital drug development pipeline that so many individuals rely on for future treatment.

Most recently, the House passed health provisions in the Build Back Better Act that seem to be better on paper than other policies when it comes to new drug development. The Congressional Budget Office stated that 1 drug would not come to market in the next decade, 4 in the next, and then 5 in the coming decade from the newest House-passed language. Is that better than 60 or more drugs not coming to market from previously proposed legislation? Sure.

But I’ll continue to ask the same question I’ve asked policymakers from the beginning, “How will this policy affect the future for patients living with autoimmune and other chronic diseases who do not currently have an FDA- approved treatment?”

Needless to say, I haven’t had much of a clear answer. Millions of individuals living with autoimmune diseases depend on the complex drug manufacturing economy. Being far from an expert in health economics myself, I’ll save the economic policy solutions and in-depth discussion of market incentives to them- but I am concerned as a patient advocate in the direction we are going.

At such a crucial time in our country’s history- one that could define the future of life-saving treatment, these questions must be asked- and they must be given a satisfactory answer for the millions of those that depend on them.

In our letter to Congress, we outlined not only concerns with legislation that would affect drug development in this country, but we also outlined a few solutions that would address immediate cost savings for patients:

• Count copay assistance toward the deductible
• Institute out-of-pocket caps in Medicare
• Address rebate system by Pharmacy Benefit Managers, send discounts to patients

These are just a few things we could do to address meaningful savings for patients at the pharmacy counter while protecting and continuing to invest in the vital drug development pipeline. It’s critical for millions of us now, and millions more in the future.

It’s one of the reasons I get up in the morning and do my job. I get up because I know somewhere this holiday season a grandmother will be dancing with her grandson by the fireplace because of these vital treatments that have come to market since I was a child. We can do both. We can bring costs down for patients who depend on high-cost medicines to survive and we can protect the exciting prospect of future treatments in development. We must.