Heart Valve Voice US amplifies its influence by working with various coalitions on issues of importance to our patient community. Our recent efforts have included:
Working with the Cystic Fibrosis Foundation and more than 160 other organizations to expand the Family and Medical Leave Act (FMLA). This is essential at a time when many patients and care partners are reluctant to return to their normal places of work for risk of exposing themselves or others to COVID-19. These provisions were included in the HEROES Act (H.R. 6800) that passed the House May 15 and was sent to the Senate (see above article). The Senate bill is likely to be significantly different but we will continue to advocate for the FMLA provisions. You can find additional information at around the 34 minute mark of this CFF video. https://www.youtube.com/watch?v=QwL-DTCx4-o&t=2071s
Heart Valve Voice US participates in the National Heart, Lung & Blood Institute Constituency Group whose current focus is seeking “supplemental funding of $300 million that would allow the NHLBI to sustain and expand its investment in vital basic, clinical, and translational research across heart, lung, blood and sleep to address these critical needs related to COVID-19 and prepare for additional waves of disease in the coming months, including protection of our most vulnerable populations.”
Working with the Alliance for a Stronger FDA (https://strengthenfda.org/) , Heart Valve Voice US continues to engage with the agency on a range of issues, including elective procedures, clinical trials and new pathways for medical devices. Executive Director John Lewis was one of a select group of patient representatives to be included on a “listening session” call with FDA Commissioner Dr. Stephen Hahn on April 30. Through the Alliance, we had the opportunity to hear another update from Commissioner Hahn on June 1.
Heart Valve Voice US is also active with international partners through Global Heart Hub. (https://globalhearthub.org/) In addition to sharing advocacy and patient engagement resources, we are participating in the new “JustGo” campaign to ensure patients do not delay seeking treatment out of fear of COVID-19: https://www.heartvalvevoice-us.org/justgo-campaign/
