By Philip Brooks
Guest Blogger and Teens Take Charge Member
On Thursday, March 3, 2016, the Congressional Rare Disease Caucus hosted a briefing on rare disease research in conjunction with the activities of EveryLife Foundation and the Rare Disease Legislative Associate’s Rare Disease Week on Capitol Hill. This was the first bicameral and bipartisan caucus briefing on rare diseases, a topic with broad agreement on solutions across party lines. Though by prevalence hydrocephalus does not necessarily count as a rare disease, it is noted as such by the NIH and certain etiologies of the condition are rare. It was important to represent our community at the event. One scientist who had developed Casselman’s disorder, which gets 5000 new cases a year, encapsulated the need for the caucus briefing by punctuating that these diseases and conditions teach us valid lessons on policy and how it can positively impact the patient community to receive the critical treatments and research for cures it so desperately needs.
The Rare Disease Caucus briefing was introduced by four speeches from the Senate and House co-chairs of the Caucus: Republican Representative Leonard Lance, Democratic Representative Joe Crowley, Republican Senator Orrin Hatch, and Democratic Senator Amy Klobuchar. Hatch, out of all four, has been the longest and staunchest advocate for disease research. In his speech he told us, “…you are doing the right thing,” and described his work in 1984 with the Orphan Drug Act to approve drugs and treatments even when they helped only a few people. He knew it had to be wrong for 30 million Americans to “endure tremendous pain but couldn’t alleviate it.” So he, like the other Legislators on the stage, supported the Open Act which allows for drugs already approved to treat certain conditions, to be repurposed for other disease or illness, making drugs less expensive and readily available to patients, as well as other acts like the 21st Century Cures Act.
His Democratic Senate co-chair, Senator Amy Klobuchar, then talked about the need for bipartisan agreement on these important issues. She recounted an experience with a group of concerned parents of rare disease patients coming to her office during the government shutdown who asked her for help. So moved, during that time she gave her entire salary to the NIH. She then went on to fight to take the NIH budget up to support good scientific research for all conditions, including Hydrocephalus. Congressman Crowley spoke on his experience: his father’s on similar health issues motivated him to work for research. He personally said that he is committed to moving the act out of the Senate to the President before the end of the year, and before a new administration.
The theme emphasized by these two senators and by their House colleagues is an important one that the Hydrocephalus Association should analyze. Can we convince Congress to stop considering your health care as a political issue, but as an issue of personal needs? When the families with their patients in need have to tell their congressman from either side of the aisle to care about them for once, their voices will be lost without advocates. Our most vulnerable men and women need others to advocate for them. It was amazing to see these congressmen come up and talk about the need for medical research because they were driven by our stories.
Politicians need your action. You are the subject of this healthcare issue. So show that to them. Politicians want to take the easy route and debate policies like they did with Obamacare. This can quickly become a debate purely on budgets, and not a mix of budgets and patients. So your job is to share our stories, not with only with testimonies, but unshakeable facts. Give them the data on our condition. Tell them that if you do the surgery just right or at the right time, maybe your kid can have the luck that I had. I have only had one shunt revision. And I feel lucky. It is our shared burden as people on the same journey to broadcast the needs of people who cannot advocate for themselves.
When my ex-surgeon Ben Carson went into politics, I wondered if he would talk about us and advocate for us. He literally had his hands in the issue, so why wouldn’t he? Then I realized that we might not have mattered to him once he tried his hand in politics. But I knew his ideology is what mattered, and he would use our feel good stories to show his expertise. Good for him. I hope his supporters were informed on our issues. Perhaps a doctor could have bridged the confusion and advocated for us. Unfortunately not, so we must rely upon these new methods to bridge this disconnect, to make those stories matter.
- Lobby them: Meet with aids or the congressmen themselves. When you do so, try not to give a prewritten and practiced short talk that includes key data on hydrocephalus. Show the tiny bit of the budget that hydrocephalus would take up. Accentuate the fact that military men can get hydrocephalus and, notably, politicians like Gabby Giffords.
- Send our thanks to congressman who ally with us: If a congressman pledges support at one of these advocacy weeks, follow up with them. Make sure we do not become pawns when the debate gets heated; some politicians use patients to guilt trip other politicians into supporting their plans. Make sure the congressmen that are our loyal supporters are petitioned to continue to support our cause. We must stay vigilant so Congress doesn’t immediately strike down laws that help us when our cause ceases to be expedient.
- Trumpet this problem as one for bipartisan agreement: With an approval rating through the floor, Congress is clearly disliked. Both parties will like signing laws that help troubled members of the public to live as full citizens. This type of issue will hopefully create national unity to work for a subset of Americans who are too often at the whims of political anger and budgetary headwinds. The congressmen want the people to see their time in office is being used to help the people, and we so desperately need that help.
We can create a change for the better, if we just work with our representatives correctly.
For more information on hydrocephalus advocacy, click here.
To join the Hydrocephalus Action Network, click here.