The Nasty New Year’s Surprise Awaiting U.S. PID Patients

This past December, the United States Congress was temporarily struck by a moment of bipartisanship when it passed the 21st Century Cures Bill. The bill, which President Obama signed into law, gives a much-needed $4 billion cash infusion to the National Institute of Health (NIH) for research funding. The 21st Century Cures Act represents the largest piece of healthcare legislation in the U.S. since the Affordable Care Act—with nowhere near the controversy of that earlier bill. Proponents are optimistic that the Act will spur much-needed innovation, especially in the fields of opioid addiction and mental health.

Not everyone is on board, though. Critics charge that it does little to relieve cost pressures on consumers, and that provisions in the bill actually weaken the burden of proving drug safety in clinical trials. It remains to be seen if those concerns prove founded, but for people living with primary immunodeficiency diseases (PID), there is a much more pressing concern.

Originally, the bill called for reducing reimbursements for medical equipment that some PID patients on Medicare rely on for their treatment—such as subcutaneous immunoglobulin pumps. Understandably alarmed by the thought of paying more out-of-pocket costs for services that aren’t cheap to begin with, patient advocates at the Immune Deficiency Foundation lobbied Congress to offset the costs by including provisions in the bill that provided separate reimbursements for nursing services, training, and monitoring.

The Good News?

They succeeded in getting those provisions added to the bill.


The Bad News?

Congress pulled a fast one on the Foundation and included a last minute rule (yes, I know; how shocking!) that pushed full implementation until 2021. Which means that PID patients who are on Medicare and rely on subcutaneous immunoglobulin treatment are facing a four-year gap where they may be denied services.

It doesn’t seem too likely that this situation will improve in the immediate future, so the best recourse for PID patients impacted by this change is community action and advocacy.

Don’t Just React! Act!

If you or a loved one are denied needed subcutaneous immunoglobulin treatment, get in touch with the Immune Deficiency Foundation pronto; they may be able to get you the information or connections you need to move forward. They’re also trying to hold Congress accountable, and could use your help and your voice in persuading legislators to take action.

There may be a lot of uncertainty about what to expect from the new status quo in Washington, but one thing is certain no matter who’s in power: When many voices speak as one, the powerful can either listen or ignore it at their peril.

Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

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