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The Kimberly Haugstad Interview

Caregiver Thought Leader Interview
Kimberly Haugstad, MBA, Executive Director
Hemophilia Federation of America

Gary Barg: Tell me about the goal of Hemophilia Federation of America and your services and programs.

Kimberly Haugstad: Our mission is to assist and advocate for people with bleeding disorders. We are first and foremost an advocacy-based organization, and that could be from a legislative or regulatory and administrative perspective or from a personal perspective. We are not representing anything except the patient families. From a social perspective, that includes education on living and coping with and understanding your disorder.  It includes peer networking to bring folks together on a regular basis.  And we invite folks to come and get involved and be a part of this community and learn and then share with others.

Gary Barg: What is hemophilia?

Kimberly Haugstad: Hemophilia is a bleeding disorder and essentially your ability to clot is compromised because one of the clotting factor proteins that is in your blood is missing or it is limited in its expression. A person with hemophilia is unable to completely form a clot and, therefore, any type of injury, untreated, can go on continually.

Gary Barg: And are there differing levels of severity?

Kimberly Haugstad: Yes. There are three different levels of severity within hemophilia. Severe is the most serious one, and essentially it means that there is no clotting factor protein in your body. A person with moderate hemophilia is going to have a little different experience. They are going to have some expression; and someone with mild usually is going to have more expression, but still not fully expressed factors. So you still will have bleeding issues even in the mild form.

Gary Barg: Can you explain the different types of hemophilia?

Kimberly Haugstad: Hemophilia A is the most common form. There are perhaps twenty thousand folks in the United States with hemophilia A. About three thousand folks in the United States are living with hemophilia B and there also is a hemophilia C, as well as several other bleeding disorders such as von Willebrand disease which affects millions of folks in the United States.

Gary Barg: Are there major differences now with someone being born with hemophilia today as opposed to 10, 20, or even 30 years ago?

Kimberly Haugstad: There are absolutely many differences in terms of lifestyle and ability. And kids today are able to function virtually in normal capacity with the exception of needing to replace clotting factor on a regular basis. Thirty years ago was a very different experience. The only product available was a blood-based product, which was pulled from plasma; and we did have a very difficult time in the 1980s when blood donors who were infected with HIV contaminated blood supplies.  In the 90s, the pharmaceutical companies were able to adopt a laboratory process to actually form clotting factor in a laboratory—no longer using the human protein, but essentially synthetically producing it. And so we feel much more confident and comfortable with our safety from a virus standpoint within our community today.

Gary Barg: What do you see on the horizon for people living with hemophilia?

Kimberly Haugstad: The horizon is actually pretty amazing right now. There are perhaps a dozen or more different products in development for hemophilia A and B, as well as for von Willebrand and other bleeding disorders. We see a lot of opportunity for longer-lasting products. Today, someone with a bleeding disorder will be treated preventatively several times a week. The longer-lasting factors look to be maybe a couple of times per month or even less at some point. So that is the first step. Ideally, what we are looking for and hoping for is a cure so we are able to genetically fix the mutation so folks no longer have hemophilia. It is a dream.

Gary Barg: What advice do you give parents who come in as soon as they get the news that their newborn child is living with hemophilia?

Kimberly Haugstad: Get involved with your local or national community. There is something incredibly empowering about getting to know other family members who are part of this process. It is a very stressful situation when you have a bleeding disorder. Coping can be very difficult. The financial implications are tremendous—easily $300,000 a year just for the cost of medication. So our families are facing not only the stress of bleeding issues, the stress of coping, but also the financial implication. What if they lose insurance or do not have access to the factor products that they need in order to be healthy? Community organizations really work hard to pull patients together so we share ideas and advice and guidance. You learn a tremendous amount from other families and parents who are dealing with these issues.

Gary Barg: Like any caregiving situation, we always find out it is a family issue. There is nobody who is not affected. What do you tell parents with regards to siblings?

Kimberly Haugstad: I can speak to this personally. I have a son with severe hemophilia, and he has a little brother. And what we teach and what we live is that bleeding disorders are family disorders. But I think it is a balance; having all of your family actively involved in the process is really important. I think you can develop some sense of normalcy within any family, even around a condition like this by just being open and honest and making sure to spend lots of quality time with all of the children. Our community organizations work very hard to include siblings in activities, really addressing the idea that families do need to come together; we function better when we all come together around the condition that we have.

Gary Barg: What would be the most important advice that you would like to share with a person living with hemophelia or their loved ones?

Kimberly Haugstad: What I would say to someone with a bleeding disorder is that you are not alone and encourage that family to be comfortable reaching out and being a part of the broader community. You are going to gain so much to learn about how to cope and how to survive, and so many tips in terms of dealing with the financial implication, et cetera. I would encourage them to not be afraid to get involved and to be an advocate. Being a self-advocate is the most important thing that we can do in this community to represent our needs first and foremost.


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