By: Cristi W., Pennsylvania

When my grandson was diagnosed with Autoimmune Hemolytic Anemia (AIHA), a rare chronic condition where the body attacks its own red blood cells, I began to recognize many of the same symptoms in myself. We learned this serious condition was genetic and I was soon on the receiving end of the same diagnosis. Simply put, my grandson saved my life.

Dealing with AIHA isn’t easy, and managing care can be just as challenging as the symptoms themselves. While we are thankfully both able to utilize injectable treatments and infusions, I still hope for new medications that could make life easier.

Anyone who deals with a chronic condition knows how it can impact nearly every part of your day. This can be especially true when relying on regular trips to doctors’ offices or hospitals to receive specific treatments. While I personally hope for more convenient options, I’m most concerned about my grandson’s future. His life is just getting started, and I don’t want him to deal with the burden of constantly worrying about his AIHA and when and how he gets his care.

Our nation’s policymakers should always prioritize legislation that puts patients and their families first. They need to improve access issues in our health care system while still supporting the research and development of new treatments and cures.

That’s why I’m so worried about the long-term effects of the Inflation Reduction Act. While well-intended, this law could inadvertently restrict patients’ access to critical treatments. The law created a “pill penalty” which steers research away from medicines that come in forms that are easier for patients to take like pills, tablets or capsules.

For my grandson and I, this issue hits especially close to home. The development of a new pill-form prescription could make it so much easier for us to manage our AIHA.

It’s frustrating to see a reckless policy potentially get in the way of much-needed progress and arbitrarily pick which medicines are more valuable than others. Most of all, it’s disheartening to see rare disease patients like us overlooked.

Congress should not prioritize certain conditions over others, and they need to correct these mistakes and repeal this pill-penalty rule. Patients like my grandson and I have so much life to live, our leaders cannot afford to waste any more time.