Have you joined the thousands of advocates around the country speaking out for Hydrocephalus treatments and cures? If not, you still have an opportunity to do so by taking just a few minutes to join the #CuresNOW campaign. Through the campaign, you’re able to write a letter to your representatives in Congress urging them to take action–now. We need Congress to put the passage of a bill titled “21st Century Cures” on the top of the agenda for September. The basic research funded in this bipartisan bill would help physicians and scientists develop more effective, less invasive procedures than brain shunts. It could even help us move toward a cure.
The U.S. House of Representatives has already passed the bill by a vote of 344-77. Now we need the Senate to take action. We have only a few weeks to make this happen. If we don’t get this done before the end of this Congressional session, we’ll have to start all over again next year.
Let’s not lose this opportunity to make a difference. Last week many of you received an email on how you can participate in #CuresNOW. If you haven’t already done so, take a minute to send a letter today by following this link. If you have already done so, here’s our guide to making a follow-up phone call.
- Look up your legislators at house.gov and www.senate.gov.
- Call (202) 224-3121 and ask to be connected to your legislators’ office. (Or you can call the number you find on the legislator’s website).
- Ask the person who answers the phone to connect you to the person who handles health care issues. Your “pitch” to the receptionist might go something like this.
- My name is  and I’m from your district. I’d like to follow-up regarding an e-mail I sent in support of a bill to find more cures for medical conditions. May I speak to or leave a message with the person who handles health care? (note: you can also ask for an e-mail address. Many offices provide those over the phone).
- When connected to the staff person who handles health care (you will likely get voice mail) you can leave a message like this:
- Hello, my name is  and I’m from your district. I’m calling today to be sure your office received my e-mail regarding my support for the 21st Century Cures Act. I am a hydrocephalus patient / health care provider / family member of a patient. Hydrocephalus is caused by an accumulation of fluid in the brain, and the only current treatment is brain surgery. Please let me know if your office will be supporting efforts to find better treatments. My e-mail is . My address is .
Note: If you are talking to a member of the House of Representatives (as opposed to a Senator), the staff may tell you that the bill has already been voted on. You can see how they voted at http://clerk.house.gov/evs/2015/roll433.xml. If they voted yes, take a minute to thank them.
The staff may say something like “we’ve already passed the bill. The Senate needs to take action.” Or even, “the Senate is holding it up.” However, members of the House can still play a role in urging their colleagues in the Senate to take action. Your message is that you hope the legislator will do everything he/she can to reach an agreement that will move the bill across the finish line before the end of the year.
If they ask you a question you don’t know the answer to (which is highly unlikely), just tell them you don’t know but you’ll get back to them. Let your HA staff know, and we can take it from there!