Twenty-plus pills a day. Two biologic injections a month, two more every week. That’s my baseline just to function like a “normie” human and keep working, and it’s the arrangement I lived in the whole time I waited. ๐๐ข๐ช๐ต๐ฆ๐ฅ ๐ง๐ฐ๐ณ ๐ต๐ฉ๐ฆ ๐ต๐ณ๐ฆ๐ข๐ต๐ฎ๐ฆ๐ฏ๐ต ๐ฎ๐บ ๐ฅ๐ฐ๐ค๐ต๐ฐ๐ณ๐ด ๐ฉ๐ข๐ฅ ๐ข๐ญ๐ณ๐ฆ๐ข๐ฅ๐บ ๐ด๐ข๐ช๐ฅ ๐ ๐ฏ๐ฆ๐ฆ๐ฅ๐ฆ๐ฅ.
Do you know what “fail first” does to a body?
A specialist (Dr.) examines you and chooses a drug for your specific situation. Your insurer says try the cheaper one or the formulary first and prove it fails, sometimes for months. And you prove it the only way the system accepts: ๐ฏ๐ ๐ด๐ฒ๐๐๐ถ๐ป๐ด ๐๐ผ๐ฟ๐๐ฒ.
Six years of adding pills and treatments that weren’t right. Seven doctors telling me IVIG/SCIG would help. Four willing to actually write the prescription. Eight insurance appeals, three full resubmissions, two peer-to-peer reviews. And finally, last month, someone said yes to my SCIG.
For most of those six years I cried out of anger and hopelessness. Lately I’ve cried out of relief, the pure nervous-system kind that had been building the entire time things weren’t working. You have to assemble the evidence that you’re sick enough to deserve care that already exists.
No one should have to prove that. And I’m not unique. It’s the same fight I’ve watched so many other patients go through.
My journey has brought a renewed sense of fight. It’s why I keep showing up on Capitol Hill with the EveryLife Foundation for Rare Diseases for ๐.๐ฅ. ๐ฒ๐ฏ๐ต, ๐๐ต๐ฒ ๐๐ผ๐ฐ๐๐ผ๐ฟ ๐๐ป๐ผ๐๐ ๐๐ฒ๐๐ ๐๐ฐ๐ ๐ผ๐ณ ๐ฎ๐ฌ๐ฎ๐ฑ.
The premise is almost embarrassingly simple. When the physician who actually knows the case says a treatment is necessary, a technicality shouldn’t get the final word. The bill would bar insurers and federal programs, including Medicare, from using prior authorization, step therapy, and medical-necessity reviews to gate care that a doctor has already deemed necessary.
The honest status? Introduced by Rep. Jeff Van Drew in January 2025, stuck in committee ever since, no floor vote. That’s where most bills quietly die.
Here is where you come in: if you work in access, policy, or life sciences, you’re holding levers most patients never will. Design the prior-auth pathway with the patient in the room. Bring the real-world evidence that makes “prove you’re sicker” indefensible. Write the medical policy that doesn’t start from no. You can shorten someone’s “๐๐๐ฉ ๐ฌ๐ค๐ง๐จ๐ ๐๐๐๐ค๐ง๐ ๐ฎ๐ค๐ช ๐๐๐ฉ ๐๐๐ฉ๐ฉ๐๐ง”.
And if you sit in Congress, or you work for someone who does: ๐.๐ฅ. ๐ฒ๐ฏ๐ต needs cosponsors and a hearing. Move it. People are failing first while it sits.
I’m still riding the high of finally getting my yes. And I can’t stop thinking about everyone still waiting on theirs.
๐
About the Author:ย Mackenzie Abramson, MPH, BCPAย (She/Her) – Patient Advocacy, Engagement & Affairs Leader | Rare Disease & Clinical Research | Lived-Experience Expert Bringing Patient Voice into Drug Development | Award-Winning BCPA, MPH.
