Yes, Michael, his son has hemophilia. Dr. Metz has witnessed firsthand the issues — medical and logistical — that come with the disease. Yes, he's served on National Hemophilia Foundation board. He's seen the struggles and the triumphs of promoting interest in a condition that the public doesn't understand, or want to understand. Yes, for 25 years he's helped run the Southern California chapter. He's met hundreds of families who live with hemophilia, not because they're "brave," but because they have no choice. They have to as a matter of survival.
But when you ask Dr. Metz to name today's most important funding priority for hemophilia, he pauses. You can tell, it's a tough question. Then, thoughtfully, he begins to reply… "There's so much important work to be done, but we must support infrastructure," he concedes. As much as he'd like to say "research" or "advocacy," Dr. Metz knows that without operational funds, the rest couldn't happen.
Yes, it's a tough choice.
"Advocacy funding is very important," he reminds us. "Without the results of advocacy, my son would be in a very difficult position." As a former national advocacy chair, he knows how much presenting the needs of the hemophilia community in Washington can make in the day-to-day lives of those with the condition, like his son.
As a young man in his mid-twenties, by law Michael was allowed to be on Dr. Metz's insurance until his 26th birthday - even if he graduated college; even if he enrolled in graduate school; regardless of his hemophilia. But that's not how all insurance companies saw it. "When Michael graduated college our secondary insurance company tried to take him off our policy. NHF knew what to do to get the company to follow the law. We learned that we weren't the only ones they did this to. NHF moved the whole company into compliance" His years of advocacy in Washington paid off in a very personal way.
"And if 'lifetime limits' weren't removed, Michael would really be in trouble," Metz reminds us. "If not, when Michael moves to his own insurance in a few months, he'd already be reaching the maximum." Without the lifting of lifetime limits, hemophilia could be a greater financial burden for every family facing the disease and a financial disaster for thousands.
Despite these gains, Dr. Metz is all-too-aware that they could quickly go away. "The problem is that in the current political and fiscal climate these could be repealed at any time." So keeping up advocacy efforts funded is as important now as it was before the laws were changed. "We can't be complacent," Metz reminds us.
Moving from his role as parent to physician, Dr. Metz understands more than most that scientific research is just as important. His medical training and practice as a primary care physician gives him insights and access to the "inside" of advancements in treatments and the road to a cure. "I go to the research meetings and actually understand what they're saying" he says with a smile.
More importantly, he sees what's behind the remarkable progress of the last 50 years. "People aren't bleeding to death. They're living longer. There are recombinant factor products... all this is because of NHF's sponsorship of research." Being a board member with feet in both the patient and research community has its advantages, and its frustrations. "A cure is taking much longer than anyone expected. While the safety and administration of treatments is much better than years ago, it's clear that the issues are very complicated."
"Eventually we will have something," he assures.
As for the future? Metz sees opportunities for extended times between treatments, alternative methods for treatment, and new molecules that address a broader spectrum of causes beyond factor eight.
"One of the great contributions of NHF is the collaborative research meetings. Scientists and physicians present papers, trade ideas and come away with a new ideas and a renewed enthusiasm for the work."
Yet for all of the progress in research and advocacy, Metz still thinks that supporting basic operations of the Foundation is the most important place to put his funding. "None of the advances in research or progress in law would be possible if the organization wasn't there in the first place," he reminds us. "NHF made it all possible. NHF saves lives and makes those lives easier."
As for giving, Dr. Metz would love to see people stretch. "I'd love it if everyone could give more than they think that they can afford." When he thinks of the sacrifice others made, it reminds him of the progress made so far. "Just think where we'd be if others hadn't made their gifts. Then think of the future if we don't make ours."
It's a sobering thought. How many would have suffered or died if not for NHF's progress in advocacy, research and the organization to keep all of it going? What tough, no-win choices would have needed to be made by families and physicians?
Thankfully, with NHF there, the lives are richer, the future is brighter and the tough choices are few and far between.