Recently, I’ve been reading a lot of online content about hemophilia on forums dedicated to the disease and in articles. It could be because my Google Alerts and scholar searches are sending me plentiful links to browse.
I’m noticing some consistent themes online: Moms are desperate for solutions; women and girls need care (and a diagnosis they don’t have to fight for); and families are tired of asking for help and not receiving clear answers or — worse yet — no answers at all. The solution is obvious to me: intensive provider outreach and education.
Hemophilia and other rare diseases are unfamiliar by definition, so we must continuously explain the characteristics of a bleeding disorder to new providers. All providers also must obtain continuing medical education credits.
While we expect our doctors and nurses to be wunderkinder, with memories like bank vaults, this is an unrealistic ideal. Nor can the practitioners we meet with regularly at hemophilia treatment centers be omniscient of each new study or finding. It is reasonable, though, to expect them to be up to date in their thinking.
The National Hemophilia Foundation offers continuing medical education through a variety of means, but based on what I read every day, this effort is not enough. The Centers for Disease Control and Prevention offer webinars, though they are limited in number. The information providers need about bleeding disorders is not reaching them soon enough to make an impact on those who are suffering today.
Why is provider education so important? Aside from helping healthcare professionals offer more comprehensive, progressive care, provider education broadens our advocacy base at the local, state, and national levels. If a wider swath of providers (physicians, nurses, social workers, physical therapists, etc.) understand bleeding disorders — even a little — we are expanding the ranks of advocates who understand the complexity of obtaining a diagnosis and maintaining appropriate care. These new advocates will better understand the current cost barriers in hemophilia care, as well as gender-related diagnosis and care issues.
Funneling our time and resources into provider education builds this new cadre of supporters that will influence policy and the regulatory environment as subject matter experts. New advocates have energy, a precious commodity that is often in short supply within our community. Provider education is our best approach for outreach, advocacy, and support for our bleeding disorders community.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.