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What I Learned About Healthcare While Lobbying on Capitol Hill

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Last month, almost 350 patients, including me, spent three days on Capitol Hill advocating for various components of healthcare reform. With the hot debate on healthcare, there is no better time for patient advocates to get involved to shape the needs for yourself and your family for years to come. Healthcare policy is multifaceted and affects every single person. Our needs are varied, so it’s impossible to have a “one size fits all” package that satisfies everyone.

Why Donald Trump says healthcare is “complicated.” (And why I think he’s right.):

1. There are currently approximately over 50 million people in America with an autoimmune disease. One in ten has a rare disease, and approximately 39.6 percent of all men and women in the U.S. will be diagnosed with cancer at some point during their lifetime.

2. According to the CDC, as of 2012, half of all American adults had a chronic illness or were in chronic pain.

3. Cancer may soon pass heart disease in the leading cause of death.

4. There are over 7000 rare diseases, 95 of which have no treatment or cure.

5. About 50 percent of those with a rare disease are children under the age of 18. Rare diseases are responsible for 35 percent of deaths in the first year of life, and another 30 percent of patients won’t reach their 5th birthday.

6. The medical community is discovering new diseases every year with no treatments or cures.

Some good news about healthcare:

1. The 21st Century Cures Act. This comprehensive bill began because a mom was an advocate for her son Max. Her desire to find a cure for his rare disease prompted her to call her local congressman. They worked together to form policy that enacted laws for patient-focused research in drug development, the Cancer Moonshot, precision medicine research funding, as well as many other laws that will directly benefit those with rare diseases. One mom’s desire to become an advocate to improve the quality of her sons’ life will improve the quality of others’ lives. If she can advocate, so can you.

2. There is hope to get possible pandemics under control. The National Institute of Health is about to go into Phase 2 drug trials for the Zika virus according to Dr. Tony Fauci, Director of the National Institute of Allergy and Infectious Diseases. Funding was increased to $1.2 billion for prevention and treatment.  

3. The process of disease research is speeding up thanks to the zebra fish. Shawn Brugess, Senior Investigator for the Functional Genomics Branch of the NIH says that zebra fish have enough of the same DNA as humans to see direct links in drug research faster. This is because they can quickly breed genomic positive pools as well as reproduce trial results. Their genome sequence can also be typed more effectively, and they’re less expensive to test.

4. People with chronic health issues are getting organized. Wendy White, Director of Global Genes, says 85 percent of those with specific diseases don’t have an organization or foundation to join, but that is starting to change. Joining or supporting an organization that promotes or helps form healthcare policy is important because “one strong, organized voice is better heard than the chatter of many.” Global Genes is helping to get people together with tool kits on how to set up an organization as well as mentoring for smaller organizations so they can grow. She also suggested that if you don’t have a disease specific foundation to join a support group. “The more people bond together the better heard they will be when trying to effect policy change.”

How you can make a difference:

1. Stay informed. Find out the latest updates on healthcare legislation currently up for a vote, or propose your own bill with your local representative if you have an idea that would benefit yourself and others.

2. Stay active. Call your local Senator or Congressperson if you feel strongly about a piece of healthcare legislation that is up for debate. Politicians really do listen to their constituents and are more accessible than you think. Your voice makes a difference. If you don’t use it, you will lose it.

3. Make sure your medical needs get funded and stays funded. Ask your local representatives to release the funds for 21st Century Cures, fund research of the NIH, and onboard much needed personnel of the FDA. Getting the Cures Act passed was monumental, but that was only half the battle. Now we must push to get it funded and staffed.

4. Stay in touch. Develop a relationship with you local representatives in Washington. If you’ve asked them to do something, make sure you follow up, and don’t be afraid the gently nudge them on a regular basis if they haven’t responded. There are over 10,000 bills on the floor at any given time. They may not remember yours. Feel free to remind them nicely. As my mama always said, “You get a lot more with honey than you do with vinegar.”

5. Vote. The best way of effect policy is to vote. Only 58 percent of all eligible voters cast their ballot in the 2016 election. If all who could vote did vote, things would move much faster in Washington because politicians would hear us clearer.

6. Get organized. Join and support a group or person who has a voice you support. Together we are stronger.

7. Be relentless and patient. There are times when the wheels of government move very slowly. Sometimes painfully slowly. Don’t give up. Consistent action pays off. Remember, you are in it for the long game. It will be worth the effort.

8. Get social but not political. Sharing information about a specific bill up for vote and asking your friends on social media to support it as well is a healthy and positive way to effect change. Shaming, condemning, pointing fingers, or any other negativity is not. If you feel strongly about a specific piece of legislation, state your case with the facts, ask nicely for support, then let it go. What happens afterward has nothing to do with you.

9. Keep track of what’s happening in Washington that affects your life. If you are curious how your representatives are voting on healthcare issues, you can keep track of their scorecards, specific bills and proposed legislation in areas of interest for free with at All you have to do is type in your zip code or interest and they will send you email updates in real time. It’s a really easy way to stay informed and voice your opinion to Congress.

10. Spend some time saying thank you. If you’ve worked with a member of Congress and they’ve helped with something, make sure you send a thank you letter. Also, share your joint success with your friends on your social media feeds. We hear a lot of negative press in the media about what’s happening in Washington. If something happens that moves the needle forward in a positive direction, spread the word.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

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Thinkstock photo by zrfphoto

Originally published: April 4, 2017
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