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Happy New Year! Like many of you, I am looking forward to 2021 and the positive changes I hope it will bring. I have great hope that the COVID-19 vaccines will be made more widely available, allowing us to return to a life that includes visits from family and friends. While the pandemic will continue to dominate our everyday lives in the near term the COVID-19 vaccines have started to roll out and will eventually be a route to normalcy. Please be patient and get vaccinated when it’s your turn. Contact your HTC with any questions but know that the vaccines are safe for people with bleeding disorders.
We will be hosting a series of weekly webinars every Wednesday at 2pm ET beginning January 13th. Join NHF president and CEO, Leonard A. Valentino, MD, for New Directions for 2021: State of the Foundation, as he shares what you can expect from NHF in the upcoming year and beyond.
What You May Feel After Getting the COVID-19 Vaccine
It’s important that people understand that there may be some side effects after receiving the COVID-19. These can range from a slightly sore arm to fever and chills. These bodily reactions are your immune system reacting to the vaccine and not an indication that you have come down with COVID, and most disappear after a day or two.

A Vaccine FAQ for Our Community
As the vaccine becomes more available, we know many people in our community have questions. We compiled an FAQ based off questions we’ve received from the community and will be updating it as more information becomes available.

President Trump Signs FY21 Federal Funding Bill Including Hemophilia SNF Access Act and Funding for Bleeding Disorders Programs
The Consolidated Omnibus Appropriations Bill, 2021, signed into law by President Trump on December 27, 2020 included a number of provisions important to the bleeding disorders community.
Hemophilia SNF Access Act
The law includes a provision to improve access to Skilled Nursing Facilities (SNFs) for Medicare beneficiaries with bleeding disorders. The Hemophilia SNF Access Act was a top priority at NHF’s Washington Days 2020. The measure has now become law and will take effect October 2021. This section of the legislation adds blood clotting factors and items and services related to their furnishing to the categories of high-cost, low-probability services that are excluded from the skilled nursing facility per diem prospective payment system (PPS) and are separately payable. This change will allow people with bleeding disorders to access SNF care when it is the most appropriate setting. rather than having to stay in the inpatient hospital for longer to be an option instead of continued inpatient care for this limited population. NHF thanks our Congressional sponsors who helped champion this legislation, and our network of providers and patient advocates that shared their experiences and concerns to make this proposal a reality in 2021.
Federal Funding for Hemophilia Programs
The law also includes funding for several federal programs important to the bleeding disorders community. The bill includes level funding for the federal hemophilia programs at the Health Resources and Services Administration (HRSA) and the Centers for Disease Control and Prevention (CDC). The HRSA program supports comprehensive care offered at the national network of hemophilia treatment centers (HTCs) and the CDC funding goes to surveillance projects at HTCs as well as patient education programs offered by partners including NHF. The CDC program did receive $2 million in additional funding to support work in the sickle cell disease community. There is an increase of approximately 3% for the National Institutes for Health (NIH) overall, as well as additional supplemental funding related to the COVID-19 public health emergency. NIH funds biomedical research including grants related to bleeding disorders at the National Heart, Lung and Blood Institute (NHLBI). These funding levels align with NHF’s advocacy during Washington Days and throughout the year. The bill also includes report language we supported indicating Congress’s support for these programs and their positive benefit on our community. NHF thanks our Congressional champions for their support of the federal hemophilia programs and all of the community members who participated in our advocacy this year.
COVID-19 Related Provisions
Finally, the law also included a number of provisions related to the COVID-19 public health emergency (PHE), including a second round of $600 stimulus checks for Americans below a certain income threshold, more funding for the Paycheck Protection Program to support businesses in maintaining their workforces, and $300 per week in supplemental federal unemployment benefits for eligible people who have lost their jobs. This is the fourth major COVID package passed by Congress in 2020 and we expect that the new Congress will consider additional packages in 2021 to respond to the ongoing pandemic. For example, this bill did not include state and local aid, which will impact state budgets and safety-net programs in upcoming sessions.

We will continue to update the community as the 117th Congress and transition to the Biden Administration begin this month. While the political environment may be changing in Washington, what will remain is the need for all bleeding disorders advocates to continue to raise their voices on the issues most important to the community.
To help support our mission and continue to provide you with the information you need through the COVID-19 pandemic, donate here. Thank you.