The Value of Treatment
I had the honor of being invited to be the sole patient advocate for The New England Comparative Effectiveness Public Advisory Council (New England CEPAC) meeting. This particular meeting was coordinated to look at a report developed by The Institute for Clinical and Economic Review (ICER) that assessed the comparative clinical effectiveness and value of several existing and emerging therapies for the treatment of plaque psoriasis. Basically, they voted on different biologic/systemic treatments to determine which had the highest “value” (most effectiveness for lowest monetary amount).
Right off the bat the term “value” didn’t sit right with me. As a patient with such a life-changing disease as psoriasis, I think I can speak for most people in saying that any treatment that can improve the lives of those living with daily lesions, itching, fatigue, discomfort, bleeding, etc. is considered valuable despite how much it costs. But I also understand that drug prices are constantly soaring, so there has to be some type of guidance for consumers and payers to reference.
Science versus experience
The report that was being evaluated was 230 pages long. 230 pages! Much of what was presented and discussed was based on scientific articles and clinical studies. In fact, I was the only patient present among researchers, clinicians, and other experts. As great as this data is, it was obvious that there were holes in this report that did not count for the inconsistent nature of psoriasis. Anyone who has been diagnosed with this disease knows that what works for one person, doesn’t necessarily work for someone else. That is what makes psoriasis so special (I use that term lightly).
Because of this, I was happy to be able to share my insights during the voting portion of the meeting. What struck me the most is that most of the Council were surprised when I mentioned that to me, overall health benefits needed to take into consideration method of delivery. I am thrilled to have found success in a biologic treatment, but I am the biggest needle-phobic individual out there. Therefore, I would rather have a shot once a month than be hooked up to an IV infusion for hours. These are the things that are not captured in scientific data.
Step therapy is an evil step mother
The final part of the meeting was where I got to speak my mind the most, and I have to admit—I had a bit of a Hulk moment. What provoked this momentary rage? Step therapy. The biggest concern of this report is ensuring that it is not used by payers as a way to implement more step therapy regulations. There were some truly amazing clinicians present with me on the panel that expressed that they need the full arsenal of treatments available without barriers for their patients. This is because psoriatic patients are unique. X drug might not work in the same way for patient A as it does for patient B, so why should they be forced to fail treatments and waste time being miserable until they are approved for the drug that the doctor recommends? I feel my green skin peeking through again.
I was pleased to know that all the concerns about step therapy will be included in the final guidance paper. My biggest hope is that Step Therapy will be abolished. To me, it is just as archaic as denying patients for pre-existing conditions and has no relevance to such a diverse disease as psoriasis.
As I look back on the whole day, I could probably write a whole book. I initially felt awkward and out of place among such experts and professionals. Thankfully, as the day went on, I realized the value of the voice of the patient. The patient is the expert. We are the ones that live every day with this disease. We know it more intimately than any textbook could ever explain. I was encouraged by this meeting and think that real change could be seen in the future.
One of the last things I said was that I realize a cure may not come in my lifetime, but I hope that I can have proper access to emerging treatments to improve my life in the meantime. This is my desire for every psoriatic patient. No one should be suffering because they can’t access medicine. There is life-changing medicine out there, and it should be available for all. Patients with psoriasis endure enough hardship just from having the disease. We are where the true value lies.
If you are interested, you can find out more about this meeting, including a webcast at: https://icer-review.org/topic/psoriasis/
How often do you experience brain fog?