Perspectives Series: Drug Access
Introduction
In the current media environment, it can be hard to know what to pay attention to. Actions taken by the administration are taken and then undone. Vitriolic statements are made by public figures and then moved on from. These types of “news” make it difficult to focus on what’s most important: the daily harm happening to Americans because of the administration. In this Perspectives Series, we redirect people to these important narratives, directly hearing from everyday Americans about their struggles.
This week our topic is healthcare. While not as widely covered as other topics, such as immigration and the economy, the administration has made the lives of many more difficult both directly through policy changes and indirectly through actions such as tariffs. Week one of the current administration saw the reversal of the Biden administration’s attempted limits on certain drug cost pipe lines. Like many of the week one actions, there wasn’t immediate impact. However, a continued attack on Medicare and Medicaid through the “one big beautiful bill” months later hampered the Centers for Medicare and Medicaid Services’ (CMS) ability to negotiate by expanding the ineligibility of FDA determined "orphan drugs” (drugs for conditions that affect fewer than 200,000 Americans). While this tug-of-war of policy continues, new drug prices continue to rise, doubling in the last four years alone.
Photo by Michael Sparks Keegan, https://www.michaelsparkskeegan.com, https://www.instagram.com/michael_sparks_keegan, Facebook: Michael Sparks Keegan - Photographer
A Research Scientist’s Narrative
Now we hear from a resident of Massachusetts, a research scientist by occupation, whose everyday life is impacted by the business-focused healthcare landscape of the United States, and whose ability to afford medication has been impacted by recent administrative actions.
I'm on a variety of meds and treatments for chronic illness. One of my conditions is idiopathic hypersomnia, which is defined by constant fatigue, similar to narcolepsy minus the randomly falling asleep bit. I treat it with a medication called Sunosi, which I take daily. I also suffer from a benign facial-nerve schwannoma (sheath tumor) under my left ear, which is treated with trigger-point injections that I used to get monthly.
Both these treatments are unusual. Sunosi is a very new non-typical stimulant called a "wakefulness-inducing agent" only approved by the FDA in 2019. It is part of the orphan drug program, which is a government subsidy to allow the manufacture of drugs that treat conditions so rare, it would be too expensive to manufacture at appropriate scale and still function as a business. There is no generic yet. Sunosi costs just under $1,000 for 30 pills. For the first year or so (2021), I paid $600 with a coupon. For the last two to three years of the Biden administration, that was brought down to $15.
These treatments have been made more difficult to access since the Trump administration took over. The price for Sunosi went back to $600 in May, and last month's batch cost $950. I'll update you on what it costs me next week. In April (I think), Medicare announced it was going to limit covered trigger-point injections to three per year. I was informed that this usually means insurance companies will follow suit; I got a surprise $500 bill after my last treatment.
I have no other choice but to take these meds. I am often tired during the day and sleep 10 hours per night with the Sunosi. Without the Sunosi, the fatigue is constant and I can sleep over 20 hours a day. Likewise, if I don’t get the injections, I feel pain and clicking in my shoulder and neck, and my shoulder can get partially pulled out of place when things get really bad. Nor are there comparable alternative treatments; the action mechanism of the trigger-point injections is unknown: we’re not really sure why it works, it just does. The only other treatment approved for treating hypersomnia is an atypical sleep aid, which Cigna, my health insurance, won’t pay for. Other treatments for the schwannoma, such as nerve blocks, come with side effects, whereas the injections are virtually harmless.
These conditions have forced me to make sacrifices: I am now paying close to $2,000 a month just for medical treatment. This money (which I have been lucky enough to save) has been coming out of savings meant to cover future surgery and rehab I will need when my schwannoma grows large enough to start affecting my nerve function. When this money runs out, I may end up having to routinely separate from my husband for 6 months to establish Canadian residency, and claim my right to the free healthcare available there. My husband is not white, and it is too dangerous for him to be regularly crossing borders.
I am not the only one facing these problems. When I go to the pharmacy now, I hear many patients asking pharmacists about the changing prices. “Are there any cheaper coupons?”, “Why was it cheaper last month?”, “What's a prior auth?”, “What happens if I don't take the meds?”, “How many can I buy for $10?”. Sometimes the pharmacist has the "magic spell" prescription phrasing the doctor needs to use to get a cheaper version of a med. Sometimes the patient still has a valid prescription for a lower dose or similar med that's cheaper, and they fill that instead. Sometimes it escalates into an argument and one or both of the patient and pharmacist end up in tears. I've never personally seen a patient end up being able to take their full current prescription home after this.There have been multiple times now where, out of four or five people attempting to pick up meds at my pharmacy, I have been the only one able to afford any.
Conclusion
Have you or someone close to you been harmed by the actions of the Trump administration? Have budget cuts or DOGE actions caused you to lose your job? Have tariffs affected your business? Has someone you know been taken by ICE? Has some other action affected your livelihood in a way not reported by the news? We want to hear your story. If you are willing to share, please reach out to ryan7664discord@gmail.com or ryj.50 on Signal. Authors may choose to remain anonymous.
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