Letter to Elected Officials re: ACA Repeal and CF

*UPDATE 9/21/17: With the added traffic to this post lately from Twitter, I wanted to add:

Next month, October 14th, I am doing a Stair Climb fundraiser for the Cystic Fibrosis Foundation to raise money for those affected with this fatal genetic lung disease – like my wife Mary.

In addition to fighting for the ACA, can you help me fight for a cure for Cystic Fibrosis? Thank you! Please visit http://fightcf.cff.org/goto/ehudzikCFClimb2017

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Below is a copy of a letter that I am sending to various federal government officials to raise my concerns about the pending fight over changes to the Affordable Care Act (ACA) aka ObamaCare.  This isn’t political, although it references party affiliation, but it is advocacy for those with chronic illnesses and other healthcare issues.  Feel free to share.

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To whom it may concern,

My name is Erik Hudzik, and although I do not live in your district or state, as you are _____________ I am contacting you regarding a matter that is deeply important to my wife Mary and I – The Affordable Care Act.  In this letter I am going to set aside partisan bickering and try to explain to you some of the very real consequences that you and your party’s cavalier attitudes towards repealing the ACA will have on millions of Americans like us.  I’m going to do this by telling our story.

My wife Mary has Cystic Fibrosis (CF).  CF is a fatal genetic lung disease that, among other things, slowly, but surely, degrades lung function until the inevitable need for a lung transplant which brings its own complications.  She is one of 30,000 Americans with this fatal disease.  When my wife was born in 1982, her parents were told she would not make it to adulthood.  Thanks to science (a quick side note – please continue funding NIH research), the life expectancy for patients with CF now hovers around 40 years old and continues to improve.  She has spent her life chasing her life expectancy.  Despite these wonderful advances, my wife has to fight to breathe every day.  Her entire life she has had to spend hours in the morning and hours at night, every day, doing treatments to stay alive.  Every year, she is subject to several week or longer hospitalizations and several courses of home IV antibiotics.  Suffice to say that we are extremely familiar with health insurance and the costs of medical care.

Mary is the youngest of three girls and is the only sibling affected by CF.  When she was born in 1982, her parents also had to very quickly become familiar with our country’s odd health insurance system now that they had a child requiring hundreds of thousands of dollars in medical care a year.  Her father was lucky enough to get a new job with better insurance, and went on to take over the business so he was able to ensure he – and the rest of his employees – could have quality health insurance.  The ACA made it easier for a small business owner like Mary’s father to offer quality insurance.  Many Americans are not this lucky.

Fast forward to 2006 when Mary and I got married at the age of 23, and health insurance now became our responsibility.  Since this was prior to the ACA, Mary could not continue on her parent’s insurance.  So while we continued on to graduate school, I had to make sure to also find a full time job that offered very good health insurance.  Many Americans are not this lucky.

As you might have guessed, CF is a pre-existing condition.  Pre-existing since her birth.  There is no way we would have been able to get insurance on the old individual market.  After getting our graduate degrees, I was able to start my career with a good job for a mid-size company that offered good health benefits.  I stayed there for 5 years until they changed to a much lower quality health insurance plan that would not work for my wife.  I was forced to quit within 3 months, and thankfully found another job with better health benefits – again, many Americans are not this lucky.

My next job unfortunately lasted only 10 months before the employer folded back into its parent company and eliminated several jobs.  Thankfully, I was again able to quickly find another job with good health insurance that would cover my wife.  All of these job changes would have been much less stressful had we had the ACA exchanges to fall back on.

Now I find myself in a situation where I have several other promising opportunities to further my career – one of which would involve being an independent contractor for a period of time.  Now, thanks to your repeal and your “plan” to eventually do… something, I cannot take the risk of doing independent work because we cannot be sure that we will continue to have the option to purchase reasonably priced individual market insurance.  You’re ACA repeal efforts have already directly harmed the individualism and small business potential of hundreds of thousands of Americans.

Adding to all of this, because of the ACA, my father, who has been battling kidney cancer for years, was finally able to retire at age 66 as now there was an option, via the exchanges, to get insurance for my 63 year old mother, an endometrial cancer survivor.  Again, with a pre-existing condition, she would not have been able to obtain affordable, quality coverage on the old individual market.  With the pending repeal, my father may have to return to work, while still battling cancer, just to make sure my mother has insurance until she reaches 65.

We followed the health reform battle very intently.  I mean no disrespect when I say that I probably have a better understanding of health insurance and related policy and economics than many members of Congress in both parties.  It was incredibly disappointing, and frankly infuriating, that your party took up the tactic of complete and utter resistance to any efforts to work together to solve the agreed upon problems in the American Health Insurance system.  Despite starting with a market based framework which was originally developed by conservatives, and the Obama administration making every effort to include Republicans and their good faith ideas, your party refused to do anything to improve the pending law.  Instead your party uniformly and blatantly simply said “no” while trotting out lies about “death panels”.  These partisan and childish tactics should, frankly, be enough to completely disqualify you from even discussing changes 8 years later – you had your chance to shape policy, and flatly turned it down.

When the ACA was signed into law, and implemented, we were ecstatic.  We finally knew we would ALWAYS be able to purchase quality health insurance, no matter my employment situation.  It opened up countless possibilities for us and our economic future.  Despite many claims to the contrary, every year when we have looked at gold and platinum plans on the exchange in our area, the costs are extremely competitive with my employer provided insurance once the portion my employer pays is taken into account.  I can’t tell you the sense of relief the ACA gave us.

But that brings us to today.  In a matter of weeks, you have begun the process of destroying something that tens of millions of Americans have come to rely on – whether they know it or not.  You are upending people’s lives.  Every vague “policy paper”, press release, or speech, presented by Republicans has come nowhere near covering as many people with as high quality insurance.  Industry leaders from insurance companies to the AMA, and health care policy experts from across the political spectrum have warned you not proceed so quickly without having a real plan to move forward.  I fear that your party either does not fully understand what you are doing, or worse, simply do not care.  I know you have run on nothing but “Obamacare Bad!” for 8 years and you have boxed yourselves in – but please, don’t ignore the real life consequences of what you are doing.  Take what works – and is popular – within the ACA and improve upon it with reasonable good faith discussions.  Take this chance to have Republicans become part of helping to craft changes to the ACA that improve it for generations – not tear it down for short sighted political gain. Please, please don’t destroy what has brought health insurance coverage, care, and peace of mind to so many millions of Americans just for blatantly partisan political reasons.

I hope you carry the thoughts of my family, the positive impacts the ACA has had on us, and the fear we have for its pending repeal, with you for every vote that you make.  I plan to continue to update you on how your actions directly affect our family – just one of millions.

One response to “Letter to Elected Officials re: ACA Repeal and CF

  1. I could not have written this any better or more meaningful as a health care professional, a patient advocate, a self employed person with pre-existing conditions and as an American.

    Thank you. I shall share your story and I hope to also hear how this effects your family and others going forward.

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