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Hemophilia and Legislative Advocacy

Get involved at the grassroots level

By Michelle Rogers Ponte | 05.10.2010
Originally Published March 2007 | Updated May 2010
Grassroots advocacy

Dave Meuleman, a materials engineer in his 50s from Canton, Michigan, stepped outside his comfort zone when he sat down to write personal letters to his state legislators in 2006.

The Hemophilia Foundation of Michigan was trying to raise awareness of issues such as the importance of maintaining the state’s safety-net healthcare program. But for Meuleman, who has severe hemophilia A, such outreach was akin to cold calling. “I was extremely uncomfortable in making a cold contact to my state legislator,” said Meuleman, who, for his effort, received a perfunctory “thank you” from his state representative.

But things warmed up when he received a personal letter from his state senator, Bruce Patterson (R-Canton­), that included Patterson’s home address on the envelope. As it turns out, Meuleman and Patterson had been counselors in the 1970s at the same camp for kids with hemophilia. That letter led to a meeting a few months later at the capitol in Lansing, where the senator enthusiastically offered his support to the bleeding disorders community.

“He expressed a great deal of interest in helping us with any issues within the state legislature,” Meuleman said. Shortly thereafter, when there was an insurance issue with the Michigan Children’s Special Health Care Services, which also covers adults, the senator made some phone calls on behalf of the chapter. In the end, said Meuleman, “It turned out to be a positive experience.” (Meuleman, who became an effective advocate in Michigan, died in March 2009.)

Grassroots Advocacy Need is Strong

The importance of the kind of personal effort Meuleman undertook is stronger than ever: The country is slowly emerging from a recession that has caused many state budgets to falter, forcing cuts in services and programs to balance the budget. Several states imposed cuts in 2009 in Medicaid, State Children’s Health Insurance Programs (SCHIP), AIDS Drug Assistance Plans (ADAP) and many other programs people with bleeding disorders access. Several states are considering proposals in 2010 to implement prior authorizations, preferred drug lists and sole source or other limited provider contracting arrangements, some directly targeting people with bleeding disorders.

The need for advocacy is strong and shouldn’t be left strictly to professional lobbyists. In fact, advocacy experts say the biggest impact often comes from the person who is willing to tell his or her story to state legislators, whether by phone, letter or an in-person visit. “People telling their first-person stories is very powerful,” says Johanna Gray, NHF Washington representative. “Legislators want to hear from folks back home.”

In South Carolina, chapter members shared their personal stories with lawmakers when the chapter fought to increase factor product options for participants in the state hemophilia assistance program. Prior to 1998, participants could use only one plasma-derived product and no recombinant products, according to Brandy Stewart, president of Hemophilia of South Carolina. Beginning in 1998, participants had access to recombinant product—but only one product—and were allowed to use it only if they had never received plasma-derived product. The chapter held several meetings with legislators to educate them about the importance of product choice. In 2007, their efforts succeeded. The state legislature agreed to allow participants in the state assistance program to access any product their physicians prescribed. At the same time, the lawmakers increased the assistance program’s budget.

Meuleman, who was involved with the Hemophilia Foundation of Michigan in Ypsilanti for more than 25 years, wanted to ensure that the state’s safety-net program remains intact for people with bleeding disorders. “It is really important to me that people aren’t driven out of work or overly confined in their career and life choices by absolutely having to go after insurance,” he said. Meuleman worked for General Motors and was fortunate to have good insurance, but he recalled a time prior to GM when he was days away from being thrown into the job market due to his company’s bankruptcy. “If I had been unemployed and my insurance ran out, I could have spent down my entire retirement savings,” Meuleman said. “It is an unsustainable situation for an individual with no insurance and no safety net.”

Grassroots Advocacy Nurtured by NHF

Recognizing not only the power of individuals at the local level telling their own stories, but also how much happens at the state level, NHF is working to make it easier for chapters and individuals to get involved in advocacy. The NHF Chapter Services Department now combines the former education and public policy departments in a targeted effort to strengthen and sustain chapters.

NHF has enlisted the help of the Holland & Knight law firm, which works with chapters. Gray, a legislative assistant at the firm, and other advocacy experts attend local chapter meetings and conferences, offer advocacy training sessions and provide issues briefings, talking points and templates for letters and editorials to help chapters effectively advocate locally. NHF also provides advocacy training at its annual Washington Days event in February. Members of the bleeding disorders community meet with their elected federal representatives to advocate for important issues. A number of states have modeled their own state capital days after this program.

Can You Be an Advocate?

The idea of becoming an advocate can be overwhelming for a first-timer. Questions arise, such as:

  • How do I get started?
  • How much of a time commitment do I have to make?
  • Do I have the right skills?

Advocacy is not a unique skill that only some people have, Gray says. “Everyone in the bleeding disorders community can do it and be really effective.”

Parents are great advocates if they understand that they have always advocated for something or other, points out Kim Bernstein, JD, former director of the Hemophilia Health Services’ A.C.C.E.S.S. program (Advocating for Chronic Conditions, Entitlements and Social Services) in Tampa, Florida. Bernstein is now president of Grassroots Advocacy Strategy & Solutions, which advocates for individuals and communities who need access to healthcare.

“You are an advocate when you go to the ER and the staff asks you how long you have had hemophilia or something else crazy like that, or when you say, ‘I need you to call my treatment center,’” says Bernstein. People may view this as different from going to Congress, but it is not, she says. It’s about educating people on the details of bleeding disorders and how the disease affects lives.

Start by working with your local hemophilia chapter and take advantage of the information it can provide. The bleeding disorders community is most effective when it speaks with one voice. Local state chapters are likely to have a summary of the issues the community is facing, along with helpful fact sheets.

The Advocacy Center on NHF’s Web site is also an important resource in learning more about federal advocacy issues that may affect you and your state. Kerry ­Fatula, executive director of NHF’s Western Pennsylvania Chapter in Pittsburgh, recommends finding a mentor when starting out in advocacy. Any chapter is a good resource, she notes, even if it doesn’t have an advocacy committee, because it is familiar with most government agencies.

Your Voice Really Does Matter

For those new to advocacy, it may be surprising to learn that legislators really do like to hear from their constituents. “Many people are shy about doing that, and the sad thing is most of us don’t ever contact our legislators until there is a big problem,” says Ivan Harner, executive director of the Hemophilia Foundation of Michigan. The chapter has set up training programs that teach consumers how to build what he calls “political currency.” It is important to build a relationship before a problem arises, he says, so that when it does happen, it is much easier to approach the person.

Back in Michigan, the state chapter rallied members in 2006 to advocate against a new bill that would have cut adults with hemophilia and cystic fibrosis from the state’s safety-net health program. Members wrote letters and made personal visits to state legislators urging them to vote against the language in the bill. A group from the chapter attended the appropriations hearings wearing red T-shirts, and Harner put together a binder for the appropriations committee with information on the disease and how cuts in the bill would affect the bleeding disorders community. It was a monumental effort. But Harner says what really made the difference were individuals who contacted legislators on behalf of the community. Eventually, language was put back in the bill protecting adults. Assurances were made that it wouldn’t be taken out again.

Letter Writing vs. Face-to-Face

There are many ways to advocate, but experts agree that putting a “face on an issue” is probably most effective. “It is sometimes hard to get an appointment to see your local representative during key voting times, so in that case a letter is the most effective way to reach them,” says Lynne Capretto, executive director of the Northern Ohio Hemophilia Foundation, an NHF chapter in Independence. Through a PACT (Partnership for Advocacy and Communications Training) grant, Ohio’s five chapters and nine treatment centers have been funded to form the Ohio Bleeding Disorders Council to do statewide grassroots advocacy. Similar to Ohio, the Hemophilia Council of California includes a partnership of hemophilia foundations throughout California and advocates on behalf of those with coagulation disorders and related complications, including hepatitis and HIV/AIDS.

Capretto says personal letters have much more impact than form letters. She also encourages members to include photos so there is a face on that particular letter. Sample letters, and even tools to send letters electronically, are available on the NHF Web site and on some chapter Web sites as well.

“With the click of a key, it will fax or e-mail [the letter] to their legislator,” says Michigan’s Harner. “We have responses in 24 hours, and it blows people away.”

Advice for That First Meeting

While meeting face-to-face with legislators may seem daunting, getting on their calendars is easier than one might think, and it doesn’t necessarily mean a long-­distance trip.

Most have local offices, says Harner, and many host local coffee hours once a month or once a quarter. “It brings them closer to individual homes in an informal and less intimidating atmosphere. We want people to take advantage of that and to talk about themselves, the disease and how it impacts them, their family and their career,” says Harner.

But keep in mind that it isn’t necessary to see the legislators themselves. “The legislator’s staff is knowledgeable and know where a legislator stands on the issue,” says Fatula of the Western Pennsylvania hemophilia chapter. Before you meet, make sure to let them know what you plan to discuss, she adds, so they have time to research the issue before you arrive.

One important piece of advice: Make sure you know whether other members have or are planning to visit the same legislator so you can coordinate your visits and don’t send mixed messages. This can best be accomplished by organizing efforts with your local chapter.

Once you are sitting across from your representative, start with the basics about hemophilia. Legislators have many issues facing them each year and may not know about hemophilia.

Tell your story during the meeting and explain how certain policies, if implemented, will affect you. “It’s important to have a clear, defined ‘ask,' so that it is easy for the legislator or staff person to respond to you,” Gray says. She recommends you first introduce yourself and and tell where you live in the representative or senator’s district. Then, use your personal story to discuss the issue or problem, and finish by providing a “solution,” explaining what you want your representative to do.

Also, try to think of creative ways to deliver your presentation. Some people bring vials of factor and medical bills to illustrate the cost of care. “Telling them your medicine is really expensive is not as powerful as showing them a factor bottle and saying, ‘This little bottle costs me $1,000, and I have to use three of these every week,’” says Gray. Since liquids are not allowed in the US Capitol building and some state capitols, it is best to bring empty vials.

Advocates can also bring their children to meetings with legislators. Kids can be persuasive advocates, whether it’s a teenager explaining what joint bleeds are or an 8-year-old showing his factor bottle and explaining that his medicine allows him to do what other kids his age can do.

Stewart, the mother of a 13-year-old son with severe hemophilia A, explained to legislators that her son had four intracranial bleeds before he was 5 weeks old, leading to a seizure disorder. To control his seizures, at 18 months he underwent a left hemispherotomy, in which the left side of his brain was disconnected from the rest of his brain to prevent the seizures from spreading to the brain’s right hemisphere. As a result, he’s weaker on the right side and is developmentally delayed.

“I took him with me to meetings with legislators and made them look at him. I told them all that he had been through,” Stewart says. “We just had a legislative day last week, and they still remember my son.”

Bring along a few national and state statistics to support what you are saying. Then follow up the meeting with a thank-you note and keep in contact. The most successful advocates stay in touch throughout the year, not just when there is an urgent issue.

On the practical side, Bernstein says to wear comfortable shoes to meetings, and just be who you are. “If you are a mom, look like a mom. Don’t try to be someone you aren’t; it doesn’t work.” In the end, she says, if you leave advocacy to the people you think are better, it often won’t get done. “If you are willing to speak up to people in a position to make changes, you will make a difference.”