ADVOCACY NEWS

Dear HFM Family,

One of the advocacy battles we're taking on is against copay accumulators, with both state and federal proposed legislation. But it doesn't stop there. The hurdles patients must clear are becoming more daunting by the day. Health insurance companies are tightening their drug formularies, making it even harder to access vital medications. This means life-saving treatments are being unfairly left out of coverage, leaving patients and their families scrambling and stressed out. And let's not forget about our amazing HTC healthcare teams, who are tirelessly fighting these decisions instead of doing what they do best - caring for patients.

We need to speak up and make sure our legislators understand the challenges our community is up against. They need to know how these struggles are affecting real people's lives and urge them to take action to protect patient access to care. Your email or telephone call could be the one that makes them see just how crucial this issue is.

So, I'm reaching out to each and every one of you to stand with us in our efforts. Take a few moments to email the legislators listed below. Share your story, express your concerns, and let them know that we refuse to stand by while patients' lives hang in the balance.

Thank you for being part of our HFM family and for your unwavering support in advocating for those who need it most. Together, we have the opportunity to make a real difference.

Warm regards,

Emma Miller

Executive Director

Sample email:

Dear _________________,

My name is [Your Name] and I'm a concerned member of the Hemophilia Foundation of Maryland, representing the Hemophilia Federation of America. I'm reaching out on behalf of our bleeding disorders community to urge your boss to support a bipartisan letter initiated by Representative Morelle (D-NY-25). This letter addresses the critical issue of narrow formularies, where health plans severely restrict coverage for medications.

For individuals with bleeding disorders, narrow formularies can be particularly devastating, often offering only one treatment option across various conditions. Given the diversity among treatments for bleeding disorders, this limitation can prevent patients from accessing the medication their healthcare provider deems most effective, or even one that adequately addresses their condition.

The Department of Health and Human Services (HHS) already possesses the authority to tackle this issue. The letter requests that HHS utilize and enforce its existing powers to ensure comprehensive coverage for individuals with pre-existing conditions.

You can find the Quill link to the letter here: https://quill.senate.gov/letters/letter/15421/opt-in/view/b21560f7-91b9-4dc3-8613-30180584151b/ . Please feel free to reach out to Jordan Jablonski (jordan.jablonski@mail.house.gov) in Representative Morelle's office with any inquiries. The deadline for sign-on is April 12th.

Narrow formularies pose significant challenges to individuals living with chronic illnesses. I urge you to stand with us in advocating for comprehensive coverage for all Americans.

Thank you for your attention to this important matter.

Sincerely,

[Your Name]