Meet Honorable Joe Crowley, UPA Director and Former Congressman

The porphyria community is lucky to be supported by dedicated physicians, researchers and advocates who work tirelessly to improve care and development new treatments for porphyria. The United Porphyrias Association is pleased to introduce you to some of them!

Can you introduce yourself and tell us a bit about your connection with porphyria?

I am former Congressman Joe Crowley. I represented Queens and Bronx in the House of Representatives for 20 years. During that time, I served in the House leadership, and I also co-founded the Rare Disease Caucus in the House along with Fred Upton.

I met Kristen [Wheeden, UPA’s President] while I was the co-chair of the Rare Disease Caucus. Her son had recently been diagnosed with EPP and she was getting involved in rare disease advocacy. When the UPA was founded in 2022, she invited me to serve on the Board of Directors and I accepted and am honored to be involved.

Rare disease has come home to me personally now. Less than two years ago my son was diagnosed with a very rare disease, and we’re learning to take things one day at a time.

What inspired you to co-found the Rare Disease Caucus?

Constituents and rare disease organizations were bringing concerns to me. One concern was the lack of treatment for rare disease, another was the slow approval process from the FDA. There was also a lack of funding from the NIH being put towards finding cures or using the science they already had to actually develop treatments.

We had the Orphan Drug Act which was passed in the 1980’s was really positive to bring focus and attention to rare diseases themselves, but there were still families that that were desperate to find relief for their children. There were changes, especially in the approval process where I thought we could have influence.

Has the environment for rare diseases changed since you founded the Caucus?

One place where I think we were really able to make an impact was on the FDA itself and moving them to approve things more quickly. There’s still a long way to go, and bureaucracy and some redundancy is important to protect the American public, but faster access to these treatments is important.

When I was the Co-Chair, we had over a hundred members, and it’s been growing steadily since I left office. I think the focus and attention of Congress members is critical because before they joined, I don’t think a lot of them have really given much thought to rare diseases, but now they’re more exposed to the issues and have a better understanding of what rare disease families struggle with.

Do you have any advice for patients or families who want to advocate to the Congress members?

If your Congress member isn’t already a member of the Rare Disease Caucus, reach out to them and encourage them to join. They like to hear from their constituents. There are many caucuses in the House of Representatives and the Senate, so what representatives take the time to get involved in is important. The more they hear from their constituents, the more likely they are to join that caucus and understand the issues.  Being involved in the Rare Disease Caucus means they’ll have a better understanding of rare diseases and are more likely to pay attention to recommendations and be engaged in legislation that affects them.

There’s a continual need for education, Congress members come and go, but the issues stick around, so it’s a process of ongoing engagement for advocates.

Is there anything you’d like to add?

Porphyria is such a difficult disease and so often it’s affecting a young person, someone who might be active and otherwise healthy. It can really restrict what you can and can’t do. Unless you’re experiencing it, I think it can be hard for others to see that it as a matter of life and death, and waiting for things to change is putting your life on hold. Building that connection with your elected officials can help sensitize them to that reality and keep them engaged in those issues.