Second Hemophilia Interview

My interview with another hemophilia acquaintance.

How old were you when diagnosed with hemophilia?

I was diagnosed with Hemophilia A in 1978; I was 5 years old.

Are you currently on factor?

Yes

Do you think advocacy is important for women (in general)?

Absolutely. Even in 2018, the inequality between men and women is still present.

It is prevalent in healthcare across the board.

In hemophilia, women are still often treated like second class citizens… we are refused testing, treatment, and frankly respect in our HTC system.

There is a wide range of care, or lack of, between centers and this needs to be corrected.

Is there anything you would change about hemophilia or the community (past, present, and future)?

I think there are many changes I would make if I could.

Obviously the past, I lost my own father to tainted blood products.

I don’t believe our physicians and treatment teams should be profiting from our treatment.

The 340b program was a good idea, in theory, but as we have seen there is little oversight and the system is full of corruption.

Greed and profit often outweigh patient care.

The politics within the industry and community are counterproductive to achieving true unity among our community.

We continue to let industry, nonprofits, and politics divide us.

What are your values about bleeding disorders, diagnosis and treatment?

I believe we need more awareness to the general public.

We need to be dispelling myths in a more proactive way.

In terms of women and bleeding disorders; we need to be more aggressive about educating medical students and healthcare professionals.

Why do you think it is hard for women to get properly diagnosed or receive treatment?

Changing decades of beliefs is difficult.

The CDC has taken a firm stance and changed policies on diagnosing and treating women.

Unfortunately, many HTCs roll their eyes when women cite MASAC on the subject.

MASAC sets guidelines, but they cannot set policy.

To change the way women are treated is going to take a change of policy at the federal level.

What are the symptoms of hemophilia?
Symptoms range by individual, but generally are excessive bruising, joint and muscle bleeds, heavy menstrual bleeding, and nose bleeds.
What should prompt a woman to get a proper diagnosis as a carrier or full on hemophilia?
Most of the leading researchers in women with hemophilia believe that if a woman is a carrier; she has a bleeding disorder.
It's just a matter of severity.
If a girl or woman is a known carrier then having her factor levels tested and knowledge of symptoms is imperative.
Most women who are diagnosed as an adult already have joint damage.
Preventing these chronic issues begins with early diagnosis and education.
How can you tell the difference between severity (mild, moderate, or severe)?
Clinically, the difference is factor levels.
<1% = severe, 1-5% = moderate, and >5% = mild.
In reality, levels mean little in relation to bleeding symptoms.
You can be clinically mild, but bleed like a severe or vice-versa.
Do you think all doctors should learn more about bleeding disorders, even if just knowing about hemophilia?
Absolutely, having a general knowledge of bleeding disorders across all practices will increase proper diagnosis.
It will reduce complications and deaths due to excessive bleeding in the general population.