The BloodFlow

Tackle policy in all 50 states or head to Washington, D.C. to walk the halls of Congress? In this episode, Lindsay Cox, former senior manager of Advocacy and Outreach at the Hemophilia Federation of America, speaks with Jennifer Muthig, the Senior Director for Advocacy & Policy at the National Multiple Sclerosis Society. Learn all about the difference between advocacy and policy-making on the state v. federal level and the accessibility of virtual advocacy as a result of the pandemic.

For more information contact HFA at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America's website at hemophiliafed.org.

Wondering if your voice has impact? In this episode, Adrian Palau-Tejada, Senior Manager for Health Disparities & Engagement at the Hemophilia Federation of America, speaks with Tyshawn Constantine, the Associate Director at the Hemophilia Association of New York. Join us as we discuss Tyshawn's evolution through advocacy work, drawing inspiration from the diversity of the New York and bleeding disorders communities and empowering others to advocate for themselves.

For more information, contact Lindsay Cox, Senior Manager for Advocacy & Outreach, at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America's website at hemophiliafed.org.

All with a little help from our friends! In this episode, Miriam Goldstein, HFA’s Interim Vice President for Public Affairs, speaks with Will Hubbert, the National Psoriasis Foundation's Grassroots and Advocacy Manager, about the importance of coalitions, alliance building, and developing confidence and enthusiasm amongst grassroots advocates.

For more information contact Lindsay Cox, Senior Manager for Advocacy & Outreach at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America's website at hemophiliafed.org.

Heard about copay accumulator adjuster programs (CAAPs), but are unsure what they are? Look no further! In this episode, Lindsay Cox, HFA’s Senior Manager for Advocacy & Outreach, speaks with Bob Graham, the New York State Bleeding Disorders Coalition's Public Policy Director, and Mark Hobraczk, HFA’s Senior Manager for Policy & Advocacy, about what copay accumulator adjuster programs are, what HFA and the NYSBDC are doing to combat this issue, and how listeners can take action to ensure that all copays count.

For more information contact Lindsay Cox, Senior Manager for Advocacy & Outreach at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America's website at hemophiliafed.org.

Did you know that other chronic disorders face the issue of step therapy as well? In this episode, Lindsay Cox, HFA’s Senior Manager for Advocacy & Outreach, speaks with Hannah Lynch, Associate Director of Federal Government Relations and Health Policy for the National Psoriasis Foundation, about how step therapy impacts our communities, what HFA and NPF are doing to combat step therapy, and how listeners can take action on this issue.

For more information contact Lindsay Cox, Senior Manager for Advocacy & Outreach at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

Tis the season for open enrollment! In this episode, Miriam Goldstein, HFA’s Director of Policy & Principal Legal Counsel, and Mark Hobraczk, HFA’s Senior Manager, Policy & Advocacy, speak with Eric Iglewski, Social Worker and Vice President of Clinical Services at the Mary M. Gooley Hemophilia Center in Rochester, NY, about what you need to know when considering health care coverage options for 2022.

For more information contact Lindsay Cox, Senior Manager for Advocacy & Outreach at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

So you're headed to college and you have a bleeding disorder. Need some advice? In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with Matt Delaney and Chantel Winslow about their experiences navigating college with a bleeding disorder.  For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

What is life like when you have a bleeding disorder and are seeking employment opportunities? In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with Hector Moreno about his path to becoming an educator and living with a hemophilia. 

For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

New administration, new Congress. In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with HFA Policy Director, Miriam Goldstein, about the 2020 US Election and what health care policies and actions to expect from the Biden Administration and their impact on the bleeding disorders community.

For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

*This episode was recorded prior to the January 20th Inauguration.

Curious about what it is like to be a Congressional staffer? Searching for guidance on how to prepare for your upcoming virtual visit? Join us Monday, November 9th at 5PM EST for another live listening session. Our very own Will Hubert chats with Audrey Smith, an aide for Senator Joe Manchin (D-WV), to give you an insider look at the ins and outs of the Capitol from a staffer’s point of view. 

For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

At HFA, we believe that advocacy is all around us from your school all the way to Congress. In this episode, former HFA Policy and Government Education Summer Intern, Will Hubert, chats with HFA Policy Director, Miriam Goldstein, about advocating for and against policies that impact the bleeding disorders community within local, state, and national governments. 

Now more than ever is it imperative for your voices to be heard to ensure that everyone has continued access to quality comprehensive health care, including future therapies. 

For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.

When you live with a bleeding disorder, having health insurance is a must. With so many options, finding a plan that works best for you can be a daunting task that consumes a lot of your time and energy. In this episode, HFA Policy and Government Education Summer Intern, Will Hubert speaks with Erin Hemlin, Director of Health Policy and Advocacy at Young Invincibles, a national nonprofit that advocates on behalf of young adults, about navigating the insurance market with a chronic illness, what pitfalls to avoid when selecting a health plan, and how to let your voice be heard as young health care advocate.  For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org. Feel free to also check out the Hemophilia Federation of America website at hemophiliafed.org and young Invincibles at younginvincibles.org. 

What thoughts come to mind when you think about mental health? How about mental health and bleeding disorders? Did your answer change?  What, if any, effect has your bleeding disorder had on your mental health?  HFA Policy and Government Education Summer Intern, Tameelah Dawson chats with fellow bleeding disorders advocates, Ashley Johnson and Bradley Odac about their experiences growing up with a bleeding disorder and the impact it had on their mental health. They address a variety of topics from surviving automobile accidents and building up the courage to get back on the road again to challenging stereotypes about bleeding disorders, being from another country, and family planning.  For more information contact Kimberly Ramseur, Senior Manager for Policy & Advocacy at advocacy@hemophiliafed.org or check out the Hemophilia Federation of America website at hemophiliafed.org.