Adults Ellis: Tireless Advocate
Ellis Sulser always goes the extra mile for his causes. His personality is easy going, but when he starts talking about advocacy, the pride he feels for the communities he’s worked with shines through. It’s reflected in the seriousness with which he talks about achieving their goals. It’s also shown in all that he’s accomplished during the time he’s been active as an advocate.
For many years he has helped to organize young people to advocate for those living with hemophilia. All of his efforts reflect this firm belief that people with hemophilia should stand up for themselves and make their voices heard, as well as understand and stay current on the issues important to the community—issues like lifetime insurance caps.
Lifetime caps were set at $1 million in 1974—a substantial amount of money at the time, but less so now after 35 years of inflation and rising medical costs. In 2009, Ellis thinks it’s time for a change. As a person living with hemophilia, he’s reached his lifetime “cap” seven times.
“It doesn’t take long to go through a million dollars,” he says.
Ellis points out that sometimes people with hemophilia go on Social Security disability because they can’t continue to change jobs every time they reach a lifetime cap.
In 2009, Senator Byron Dorgan (D-ND), Senator Olympia Snowe (R-ME) and Representative Anna Eshoo (D-CA) introduced the Health Insurance Coverage Protection Act (S. 442/H.R. 1085). The bill increases the lifetime caps in private insurance plans to $10 million, with an annual inflationary index. The legislation would allow people with bleeding disorders and other chronic conditions to maintain their private coverage and not have to seek public assistance, such as Medicaid or state high-risk pools.
Ellis is behind the legislation 100%.
“I support the increase in the cap, tied to the cost of living increase. Better yet would be the elimination of lifetime caps. One way or another, the treatment will be paid.”
In his long experience as an advocate for those living with hemophilia, Ellis has led initiatives which address the challenges facing their community.
He’s also worked on behalf of other groups, from helping people living with hepatitis, to raising awareness of organ donation and missing children. The more he got involved, the more he realized how powerful his voice could be. But, he wasn’t always empowered to speak out.
In the 1960s, while growing up in Fairfax, VA, a young Ellis spent three or four days a week in the hospital. When he wasn’t there, he spent much of his time in a wheelchair due to chronic bleeding in his left knee. Because of his disability, people assumed he was also developmentally challenged. “I rode in a special bus and went to a special school where the teachers didn’t even try to teach us much,” he recalls.
Ellis was fortunate that his parents strongly advocated for him to get a good education.
“My father stood up for me,” he says. “He wanted to know why I was in a wheelchair if I only had one leg that was bad. So the doctors got me up out of the wheelchair and on crutches and that allowed me to go back into the general public school system.”
But the challenges didn’t stop there; in high school Ellis had great difficulty finding a job.
“I would apply for work at the local gas station, and they would just look at me on my crutches and say, ‘There’s no way you’re going to work here.’”
Ellis finally got a break when his father, who had a friend working for the Distributive Education Clubs of America (DECA), helped him get a job in their mailroom at the age of 17.
Ellis worked at DECA for the next 20 years, eventually moving up through the ranks to become an operations manager in charge of two departments. When DECA learned of Ellis’ HIV, his supervisor at the time set up a leadership scholarship in his name. The impact on the scholarship’s recipients was remarkable: many were so inspired by Ellis’ story that they dedicated themselves to working with those who face challenges in their everyday lives—not only in the hemophilia community but in others as well. Impressed and inspired himself, Ellis began to search for other opportunities to encourage people to take control of the challenges they face.
In 1994, Ellis and a number of friends started a specialty pharmacy focused on bleeding disorders. They realized there was more they could do to help people with hemophilia. “One of the things we wanted to do,” says Ellis, “is help our own community. When we met with Speaker of the House Newt Gingrich, he told us to look within for funding to help our own people. And what we decided to do was start a company that would have a positive presence in the community.”
In addition to fighting for a change in lifetime caps, he volunteers his time for the Hemophilia Council of California’s annual Future Leaders Program, a two-day training session that educates teens about the issues being debated in the California General Assembly and gives them the opportunity to speak to their State Legislators. He sees the training session as a valuable way to develop future advocates.
“They need to be advocates for their own disease state, to be able to tell their story to their assemblyman or senator in the state legislature,” he says. “Sometimes people are quite afraid to open up to their representatives. They think that politicians are in a high position and don’t care about people, but nothing could be further from the truth. Representatives do want to hear about us, because they want to understand how legislation will impact our lives.”
Ellis talks passionately about the importance of constant vigilance and works with the Hemophilia Federation of America to keep track of various pieces of legislation proposed around the country concerning hemophilia, blood products and treatment centers.
“When people ask me what they can do, I tell them to learn. Learn everything they can about their hemophilia. They should become empowered and not let others dictate their care. Then they can go to the next level and get involved in their chapters, most of which have government relations committees. By doing all that, they can take care of themselves and give back to the community.”
On a personal level, Ellis finds satisfaction in his work to ensure that the issues surrounding the hemophilia community are well represented to lawmakers, but he often remembers the people who got him started in advocacy.
“I feel like I’m speaking for so many who have fallen before me. I’m always remembering them whenever I’m working on an issue. They’re the people who first got me fired up about advocacy. And all these years later, I can tell you—I’m still fired up.”