Page 4 - HFA Dateline 2020-2021 Special Issue

DEAR FRIENDS —

One of our guiding principles since our founding has been to provide the tools and education
patients and their families need to make informed decisions about their bleeding disorder. This
annual special edition of Dateline Federation is a product of our focus on that principle. We hope
you find this tool helpful in your journey navigating treatment options and emerging therapies
and a conversation starter for you and your medical providers.

It was 17 years ago when I was choosing a treatment option for my newborn son with severe
hemophilia A. The overwhelming feeling remains vivid. It was a confusing and scary process,
despite having wonderful support from the staff at our local Hemophilia Treatment Center. I
was a mom, unsure of how to even spell hemophilia at that point, just wanting to make the right
call for my baby’s health. But, I didn’t know what questions to ask, what specifics to consider or
even what our options were. At that time, little did I know that the number of treatment options
for bleeding disorders would nearly double before my son even graduated high school and that
novel treatment options beyond a recombinant clotting factor would become readily accessible.

As patients, we have the right to know our options. But it is our responsibility to educate and
empower ourselves about our disorder. From our community’s history we know that patients and
their families look to advocacy organizations such as HFA to provide the facts and information
needed. HFA remains committed to being a trusted source of information for you. Furthermore,
we are steadfast in our commitment to ensure a safe blood supply and transparency around
treatment options and their efficacy.
We’re continually evaluating the educational content we produce, always looking for ways to
improve the resources we create for families. This product guide and list of emerging therapies
has evolved over the past five years in an effort to create a tool that is useful. Our team is currently
exploring ways to dive deeper into the topics you see in these pages, including an
overview of products by disorder, access issues in insurance coverage and a
look at the future of gene therapy and other new novel treatments.

As always, we want to hear from you to know if these are topics you want
us to focus on, with the possibility of HFA hosting a multi-day online
event focused on treatment options. What do you think is missing
from the current tools and resources available to you and your family
around treatment options and emerging therapies? Who do you want
to hear from: doctors, researchers, manufacturers? Contact us at info@
hemophiliafed.org; we’d love to hear from you!

Our legacy as a community of informed, engaged, educated and empowered
advocates demands we always continue to gain the knowledge we need
to move forward toward improved treatments and outcomes for everyone.
Let this resource be a launching point for you.

Sonji Wilkes

Hemophilia Mom
VP, Policy & Advocacy

4 DATELINE FEDERATION < www.hemophiliafed.org