Dear LE&RN Supporting Members and other allies,

On March 10th, the Senate voted 68-31 to pass an omnibus bill that will fund federal government agencies for the remainder of Fiscal Year 2022. The House passed the measure the previous day. The bill is now on President Biden’s desk.
 
Why is this important to the lymphatic disease (LD) community? Simply, because thanks to the activism of the community and LE&RN, the following language is stated in this bill:
 
Lymphedema (LE)—The agreement directs NHLBI to increase support for research on LE and to establish a Research Condition Disease Categorization category for research related to lymphedema.

National Commission on Lymphatic Diseases—The agreement directs NIH to establish a National Commission on Lymphatic Diseases and to engage with relevant Institutes, Centers, and external stakeholders in establishing this Commission. The agreement directs NIH to provide an update on progress to establish the Commission within 60 days of the enactment of this Act.

In 2021, we succeeded in getting Congress to “encourage” the National Institutes of Health (NIH) to establish the commission and Congress “requested” a report of all LE research done in the last five years. At that time, NIH’s Director reported to Congress that a Commission wasn’t needed and that he could not report on what LE research NIH had done because NIH did not have a research category for lymphedema (LE).
 
NIH’s position informed our community that it needed to strengthen its request. We did this during LE&RN’s 2021 Lobby Week and through a series of meetings with legislators.  

So, how does this language change the equation? 

• A National Commission on Lymphatic Diseases makes LDs a priority. It will yield clear input from stakeholders that will then be presented to Congress for action. The bill now directs NIH to establish this Commission.
• Once NIH establishes a category for LE, there will be no more uncertainty about their level of research, or commitment, in this area. The 2022 bill directs NIH to create this category
• The Bill clearly then asks for an increase in LE research funding.

Another LE&RN agenda item that is included in the 2022 bill is a doubling of funding for the CDC’s Chronic Disease Awareness Grants. LE&RN received a three-year grant from this program in 2021 to pursue a LE Awareness Campaign. This new funding secures the program.
 
You can’t win a fight you don’t join. The community embraced the actions above and it won. Our efforts continue. Congratulations to you all.

Sincerely,

William Repicci
President & CEO, LE&RN