In Body

A Case For Why You Need To Be An Advocate

Last week, almost 350 patients, including me, spent three days on Capitol Hill as an advocate for various components of healthcare reform. With all of our healthcare components currently under legislative debate, there is no better time for patient advocates to get involved to shape the healthcare needs of ourselves and our families 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 he’s right):

  • The sheer volume is overwhelming. Our nation has never been sicker. There are currently 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 US will be diagnosed with cancer at some point during their lifetime.
  • Studies show that almost half of the American population as a chronic illness or is in chronic pain.
  • The needs of the chronically ill are multifaceted and the strain on their families is tremendous.
  • There are over 7000 rare diseases with no treatment or cure for 95 percent of them.
  • 50 percent of those with a rare disease are children under the age of 18 and responsible for 35 percent of all deaths in the first year of life. Another 30 percent won’t reach their 15th birthday.
  • The medical community is discovering new diseases every year with no treatments or cures.

39.6 percent of all men and women in the US will be diagnosed with cancer at some point in their lifetime.Click To Tweet

Some Good News About Healthcare:   

  • 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 everyone’s life. If she can advocate, so can you.
  • 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. Zika virus is still on the rise and could potentially cause a pandemic crisis. Funding was increased to $1.2 billion for prevention and treatment.
  • More companies are investing in new treatments. According to Jonathan Goldsmith, Associate Director or the Rare Disease Program at the FDA, between 1983-2001 there were 82 orphan drug applications for new treatments for rare diseases with 59 designated. in the last seven years, there was 374 application reviewed with 248 designated. More pharmaceutical companies are taking an interest in rare diseases because stronger incentives are being offered
  • People with chronic health issues are getting organized. There is strength in numbers with more organizations forming to have a stronger voice in Washington. Wendy White, Director of Global Genes says that 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.”

There is strength in numbers with more organizations forming to have a stronger voice in Washington.Click To Tweet

Simple steps to make a difference as an advocate:

  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 ask 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% of all eligible voters cast their ballot in the 2016 election. If all that could vote did vote, things would move much faster in Washington because politicians would hear us clearer.
  6. Get organized – The NRA (National Rifle Association) isn’t as effective as it is because it’s the biggest or has the most money, it’s effective because it’s extremely organized and vocal. Join and support a group or person that 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 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 www.govtrack.us. 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.

 

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