It's easy to think of politicians as ignorant or foolish or self-aggrandizing, and I'm about as cynical as anyone, so I was pleasantly surprised by the experience of visiting Capitol Hill to advocate for sustained funding for basic science research at National Institutes of Health. I went to the offices of Elizabeth Warren, Ed Markey and Joseph Kennedy. Their staff members (including some with medical training) were all well-informed and passionate about both their legislative work in general and supporting the NIH in particular.
The meetings were organized by the American Society for Bone and Mineral Research. Network President Becky Mock and I were assigned to different teams to go to the offices of Senators/Representatives from our state (or nearby). My team consisted of Roland Baron, DDS (Harvard School of Dental Medicine), Beate Lanske, PhD (also with the Harvard School of Dental Medicine), and Lisa Samelson, PhD (Harvard Medical School, Institute for Aging Research).
Dr. Baron, who is in the middle of what is already a distinguished career, was particularly concerned about the lack of financial stability for younger researchers starting their careers today, and worried that this instability would deter the best and brightest students from pursuing a career in scientific research. Dr. Lanske echoed this concern, and focused on the real-world consequences to patients like me if there's a suspension of research. Dr. Samelson kicked off each of our presentations with facts and figures about the costs of NOT funding research into bone metabolism (e.g., not developing better methods of preventing and treating osteoporosis), especially with the elderly population growing rapidly.
The legislative offices I attended were all very supportive of NIH funding, and sympathetic to our requests. Even so, we were able to point out some features of medical research and living with a rare disease that they found noteworthy, and that they might be able to use to persuade less sympathetic colleagues.
One of the things that appeared to strike a chord with the staff members, and that they will likely remember, came out of the fortuitous pairing of Dr. Lanske with me, as an XLH patient. We formed a sort of tag team, demonstrating both the technical and the personal sides of research. Dr. Lanske has been studying the hormone that goes haywire in us, FGF23, almost since the hormone was first discovered (about a dozen years ago), but she's been working with mice, and had never met a human with XLH before this event. You can imagine how thrilled she was to meet not just one, but two of us!
The legislative staffs weren't the only ones who got an education during this event. I didn't know just how much research is happening in the bone metabolism field, or the struggles that young investigators are experiencing. I'd also never thought much about patient registries, but Dr. Samelson (an epidemiologist whose first thoughts always involve data collection) has me thinking about the subject in the context of the XLH Network.
In summary, I'm not being cynical, just realistic, to acknowledge that no single meeting is going to change the future of medical research. Still, I believe it's important for the XLH Network, along with other patient support groups, to keep reminding the budget-makers of the absolute necessity to support basic medical research, the type of research that simply won't get done if government doesn't support it.
Our president, Becky Mock, is particularly committed to doing this kind of advocacy on our behalf (and is a brilliant networker). She's looking into expanding our advocacy work at both the national and local levels. I'm sure she'd love to hear from you if you'd like to become involved too, or if you know of any opportunities for our voice to be heard.