In each issue of HemAware, we take a look at how local NHF chapters and associations are making a difference in their communities. This month we talk with Brian Ward, president of Hemophilia and Bleeding Disorders of Alabama, Inc., about its advocacy efforts.
How did you get started?
We started our advocacy program before we really had a chapter. We formed from a support group with a bunch of families, and we were incorporated, but we weren’t really operating as a chapter yet. We got invited to attend PACT (Partnership for Advocacy and Communications Training), which the Hemophilia Association of New Jersey puts on.
I learned an awful lot when I was up there. We listened to state legislators, people from insurance companies, chapters doing advocacy work—just finding out what’s important to people in the bleeding disorders community and what everyone was doing about it.
I realized that advocacy needed to be a very big piece of what we were doing. PACT made me realize I had to do something.
What was that “something”?
The “something” got put right before me when BlueCross and Blue Shield (BCBS) of Alabama decided that it was going to move to a sole provider contract and do business with only one home healthcare company. BCBS has 90% of the private insurance market in the state, so that would have affected a lot of people with hemophilia. So I just jumped in and started talking to BCBS.
How did you begin talking with BCBS?
We had a conference call with BCBS, and after, the pharmacy benefits management director said he would like to talk to me. So my wife and I went and had lunch with him. I talked as the “voice of the chapter,” and my wife went as the “don’t-mess-with-me mom.” She made everything personal and showed pictures of our son. He got to know who we were and what the realities are of living with or being a person with hemophilia. After that meeting, he said, “I’m going to tell BCBS that we need to rethink our plans.” I think it was talking family to family, person to person—it helped out a lot.
Why did you decide to advocate with an insurance company?
We have a good relationship with the insurance company. Alabama is a conservative part of the country; there isn’t a big sense down here that insurance companies are all bad. Since I own a business, I talked to them from a business-to-business point of view. They were misinformed as to a lot of it, but the way they were looking at it, it made sense from a business perspective. Now they will call me when they’re going to do something provider-related and say, “We want to know what the chapter thinks.”
What has been the end result?
When BCBS told us about moving to a single provider, we said we didn’t necessarily want unlimited choice of home healthcare providers, but we did want a choice of quality providers. They’ve decided they’re probably going to restrict the network to three home healthcare providers.
Have you done any advocating to the legislature?
We’ve been working on a Hemophilia Standards of Care Act bill, similar to MASAC #188 (“MASAC Recommendations Regarding Standards of Service for Pharmacy Providers of Clotting Factor Concentrates for Home Use to Patients with Bleeding Disorders”). We took New Jersey’s law and Pennsylvania’s proposed House bill and found a senator who was willing to structure a rough bill. We worked with NHF, COTT (Committee of Ten Thousand) and HFA (Hemophilia Federation of America) to shape and refine the bill.
What would you recommend to chapters that want to get involved in advocacy?
Find an issue that’s important to your community and just start doing something. Don’t worry if you don’t have it all figured out. Just go do it.