On December 8, 2022, the Rare Disease Legislative Advocates (RDLA) hosted their monthly webinar. These webinar help provide updates to the rare disease community on legislation and other policy initiatives that are relevant to the treatment and management of rare diseases under the law. In this program, a panel of speakers provided perspectives on the final weeks of the lame duck congressional session and a look into the future for 2023.
Panel speakers for this program included:
- Jenifer Waldrup, Rare Disease Diversity Coalition
- Nicholas Manetto, Faegre Drinker Consulting
- Cheryl Jaeger, Williams & Jenson PLLC
The group of panelists was asked a number of questions related to what the rare disease community can expect going forward into next year.
Jenifer points out that the media isn’t focusing much on healthcare at the moment, but this is a fast-paced time for the coalition. She also highlights that the US Food and Drug Administration (FDA) has been making efforts towards improving representation in clinical trials. The necessary changes have been laid out and hopefully momentum will continue to build going into 2023.
Nicholas noted that there are still a couple of must-pass legislative packages that need to be addressed in the lame duck session. What is uncertain is how broad or narrow these packages will be, which would determine whether it’s possible to tack on any last-minute rare disease priorities. He also points out that the bipartisan support for rare disease initiatives means that even though the Republicans will have control of the house, it isn’t likely to have a huge impact on making progress on the community’s priorities.
There are new members coming into Congress that advocates should start to develop relationships with, but Nicholas also highlights that the reps seeing their second or third terms shouldn’t be overlooked.
Cheryl notes that the final mass package left is the appropriations bill, and the parties have not come to agreement on a lot of the figures yet. This is a good time to start educating about the issues that the rare community is focused on. She points out that several bills related to issues such as opioids and addiction are going to be up for renewal and could serve as potential opportunities to tack on bills relevant to the rare community.
To see the full panel discussion, click here.
