The Rare Disease Legislative Advocates (RDLA) held its monthly webinar on April 22, 2021. In this informational webinar, the organization featured several speakers who provided updates on some of the latest legislative initiatives relevant to rare diseases that are being considered in the US Congress, as well as one being considered for the state of California.
The session began with an update on Rare Disease Week, which, as a reminder, will be an entirely virtual event this year as the COVID-19 pandemic hopefully winds down. The event will run from July 14-22. Even though this year’s event will be virtual, it is still guaranteed to be packed with important events and activities, including virtual visits with Congressional representatives and senators. Click here to get registered.
Jamie Sullivan from the EveryLife Foundation for Rare Diseases provided an update on the upcoming US government budget for 2022, which is in the early stages of being debated in the legislature. So far, the Biden administration has only released its ‘skinny budget’ which provides some info on the largest priorities. However, it looks like the administration is asking for an increase in medical research funding.
The foundation has specific asks for the FY 22 budget, such as the FDA Office of Orphan Products Development (developing products for rare diseases), National Center of Advancing Translational Sciences (rare disease research), Undiagnosed Diseases at the NIH Office of the Director, and the CDC National Center for Health Statistics (improve diagnostic accuracy for rare diseases). The organization is hoping for funding increases in all of these areas.
John Richardson from the National Society of Genetic Counselors also spoke about another important bill that could have significant implications for the rare disease community. HR 2144, introduced by Brian Higgins (D-NY) and co-sponsored by Mike Kelly (R-PA), Ron Kind (D-WI), Vern Buchanan (R-FL), and Rodney Davis (R-IL), is intended to improve access to genetic counseling, particularly for people that rely on Medicare for health coverage.
Under Medicare, genetic counselors have not been granted provider status. This creates a barrier for access, as access to genetic counseling for these patients requires a referral from a physician, the physical presence of the physician during the meeting, and for the supervising physician to bill the service. This inefficiency makes it less likely for a physician to refer a Medicare patient to genetic counseling even when it would benefit them.
The bill would allow for genetic counselors to be reimbursed independently without these barriers and permit telemedicine services for them. Ideally, passing the legislation would help improve access to genetic counseling services for all rare disease patients.
Heather Ferguson spoke next about the Lymphedema Treatment Act, a bill that would mandate Medicare coverage for compression garments, a critical component of lymphedema treatment. The hope would be that private insurers and other agencies would follow suit after the setting of this standard.
Lymphedema often occurs alongside other illnesses; it is associated with 40 rare illnesses. Often one of the most challenging aspects of care due to limited treatment access. 85 percent of Congress sponsored the bill last year, but it was not taken up by the Senate. Now that the Democrats control the Senate, the chances of the bill being taken up have increased. 33 Democrat and 21 Republican Senators have already announced their sponsorship, and the bill was scheduled to be taken up on the day of the webinar. Click here to learn more about this legislation.
Shanna Ezzell from the office of California assembly member Brian Maienschein provided an update on AB 114, a bill that would cover whole genome sequencing in the state. This testing is very costly but often is the only way for certain rare diseases to be properly diagnosed. Click here to learn more about it. State residents are encouraged to weigh in and express their support.
