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The Kimberly Haugstad Interview (Page 2 of 2)

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

 

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.

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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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