One month from today I leave for Nepal, to visit the families we support through Save One Life and then to hike 9 days through the Himalayas to Everest base camp with Chris Bombardier, one of my hemophilia heroes!
Thinking of this trip and Chris got me thinking about another hemo-hero I knew once. And his legacy is so important because almost everything we worry about now regarding health insurance coverage, he warned us about back in 2003. Dave Madeiros was our Paul Revere, sounding the alarm about vast and sweeping changes in healthcare insurance coverage that would deeply impact us all. And he was right.
|Dave Madeiros and his beloved
Dave had hemophilia, HIV and hepatitis C, as did his brother Larry. Proactive positivism seems to run in the blood as well. Both men were intelligent, handsome, smiling, gregarious and outrageously charming. And Larry was already quite famous: he and his wife Carol became the first US couple to successfully employ a technique developed in Italy that would allow them to have a healthy child despite Larry having HIV.
I met Larry at the tail end of an NHF meeting back in 1999, I believe. He was so full of passion and ideas. He wanted to try to work together with me. I met Dave later on; I can’t even recall when exactly. But he knew I had a newsletter, PEN, and knew I was well known in the community. He had a message to get out to our community.
The good times were coming to a close. All that we knew about healthcare insurance was going to radically change.
I first thought Dave an alarmist, or maybe at best, just overly dramatic. But no. Dave was a rare leader, a visionary. He knew exactly what he was saying, and sought to convince me. He invited me to come quarterly to his office in Boca Raton, Florida to have brainstorming sessions with his team. Dave was founder of the Factor Foundation of America, a nonprofit. Its mission was to provide financial support and education to the hemophilia community. He funded it through the sales of factor. He had established a pharmacy, and up to 70% of profits would be channeled back into the community.
At a time when CEOs of specialty pharmacies were getting quite rich off their earnings, and the specialty pharmacy industry was very much unmonitored by the government, Dave stood out. He was a man of his word. I met his wife Kim and visited his home. It was modest, his sole luxury a classic Shelby Mustang he adored.
His driving force was to help the community. Return profits back to it to fund programs, and most of all to alert it. At one meeting in his Boca Raton office, after he had explained to me what was going to happen, I said, “It’s like a coming storm.” Dave turned around a white board he had against the wall and on it were the very words The Coming Storm. It was eerily coincidental how similar we saw this threat to our community.
Dave educated me about pharmacy benefit managers (PBM) which threatened to take over the factor distribution business (they since have). No one at NHF had even heard of a PBM. Neither had I. He told me about coming formulary restrictions, predicted specialty pharmacy consolidation (true on a massive scale) and cut backs in reimbursement, which would cause funding to NHF chapters and programs to disappear. Insurers would question having so many products to choose from (they do now) and would seek to limit choice (a way of life now).
Dave was visionary; he saw it all. He fed all this information to me, to write a three-part series in PEN starting in 2005, about coming insurance changes and how they would impact our community.
After our articles were published, the alarm was sounded. Our advocacy groups started to plan and respond, and proactively meet with insurers to educate them about our needs, and to maintain access to choice.
Some of the happiest memories of working in hemophilia were my trips down to Boca. I recall how trusting Dave was of everyone, how open he was with his personal struggles and his dreams. How good-hearted he was to all. He adored his wife Kim. His dedication and compassion were immense: he and Kim adopted a child with hemophilia.
|Dave Madeiros and son Jason
We last met on February 24, 2004, in Boca, after we spent the previous two days working together with his team. We were having breakfast, talking about next steps for his company and plans. I left to go back to Boston and two days later, one of Dave’s business partners called to say that Dave had collapsed the day after I left, and was rushed to the hospital. He passed on February 29, from liver failure. We were all devastated. Of all the people we have lost in the community, his affected me the most. He was like a brother, he was a friend, and above all, a mentor. A leader of rare qualities.
Our national and state groups are doing a superb job of engaging with the government about Medicaid and the private insurers about preserving our hard-earned coverage. But I sometimes wonder where we might be if Dave were still here, advocating for us. What would he think of the ACA? The current attempts to repeal the ACA?
When I returned to Boca a few days later to attend Dave’s funeral, Kim said to me, “He thought the world of you.” I thought the world of him. And the world is so empty without his leadership and vision, his laughs and ideas. Kim wrote in an homage to Dave, “Dave loved his life and lived it with energy, gusto and bravado. To have known Dave is to be touched by a loving and lasting force forever.” Thirteen years later these words are still so true.
We miss Dave, but our community continues his legacy to maintain access to therapies, and seek coverage for all with bleeding disorders. Dave died while doing battle, like so many classic heroes. It’s a battle I hope we will win.