Dialing for MS Dollars: Fighting ‘Repeal and Replace’ One Call at a Time

Mike Knight avatar

by Mike Knight |

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healthcare and MS

I have written multiple iterations of this column trying to keep pace with the disastrous healthcare bills being presented first in the U.S. House of Representatives and now the Senate.

But I can’t keep up with them. There are just too many and they come too fast.

Each proposal to repeal and replace the Affordable Healthcare Act (ACA) has been met with public disdain in no small part because each would force up to an estimated 32 million people from government-supported healthcare insurance coverage over the next decade.

For comparison’s sake, 32 million is more than the entire population of Texas (which has about 27 million people) and not much less than the population of Canada (about 36 million in 2016).

Ever since President Donald Trump was elected, Republicans have been racing to repeal and replace the ACA, legislation that protects tens of millions of U.S. citizens from unforeseen and often unavoidable medical challenges and the financial ruin that typically accompanies them. Worse, besides including policies that would cripple many people and families — especially those at or near the poverty line — many of the replacement bills include huge tax benefits for the wealthiest citizens in the U.S.

For those with MS and other chronic illnesses, the bills presented by Republicans, who currently control both the U.S. House and Senate, are especially scary because they would make affordable and useful healthcare practically impossible for people with pre-existing conditions.

I’ve never called an elected official before. But not too long ago I called Sen. Todd Young’s office, a conservative Republican and one of our state’s two senators, to ask him to please put country over party and vote against these bills.

I’d read that sending an email to elected officials is not the most effective way of getting their attention and sharing one’s point of view. A well-written, civil letter is better, followed by a phone call and finally, scheduling a personal visit.

Here is a step-by-step approach that might help if you decide to call your elected officials, too:

Step 1:

Find out who your elected officials are (along with their contact information) here.

Step 2:

Prepare concise talking points in advance. (I was afraid I’d ramble incoherently if I didn’t.) More tips about what to say may be found here.

My goal was to bring the issue to life for Sen. Young so that he might recognize his decisions affected real people (who vote). These are the talking points I used:

  • I’ve been a tax contributor for 45 years and a voter since 1978. (I’ve written for, and to, affluent political types and know that key phrases — like “tax contributor versus tax consumer” — resonate with them.)
  • I have MS, an incurable, debilitating disease without an understood cause. More than 8,200 people in Indiana have the same incurable illness. (Your local chapter of the National MS Society can provide that information if you don’t have it already.)
  • The annual cost of my MS medications exceeds $90,000, well over the state’s median household income. (Indiana’s median household income was less than $50,000 in 2015. Find your state’s stats here.)
  • Pre-existing condition loopholes written into the new healthcare plans could make healthcare insurance prohibitively expensive for my wife and me if she lost her job (and the healthcare insurance that comes with it), forcing us to choose between paying for my medicine or keeping our home or eating, and likely leading us into poverty as senior citizens.
  • Our taxes pay government employees’ wages and we will hold them accountable for their actions.
  • Happy to talk on the phone or (gulp) meet in person.

Step 3:

Remember to be civil.

Step 4:

Call your senators first. (The Senate is currently crafting the bill which, if approved, will likely be sent back to the House for further amendment, then to a review committee if needed before President Trump signs it into law.)

Step 5:

Make the call. Now. Chances are you’ll get an automated telephone attendant that directs you to a voicemail box and the option to record a message. Avoid making any sort of threat, perceived or otherwise. 

Step 6:

Don’t leave anything to chance; don’t just call Republicans — call Democrats, too, and keep calling. (I’ve written recently about Pilates and voice-to-text technology only being as beneficial to me as the effort I put into them. The same can be said about democracy and our country’s government.)


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Agnes Weessies avatar

Agnes Weessies

I would support anything that would help to benefit those with MS. Fact is after the last two years of dealinbg with ObamaCare and it's real impact on benefits for those with MS, nothing could be worse. that is right. It is crap now, and if crap replaced it well it is still crap. The most telling thing in the diagnosis of my son with MS was the sweet African American nurse who point blank told us when we were filling out the paper work for medicaid and medicare, "It would be easy if you painted your son brown and changed his name to Sanchez." Seems there are groups that get the benefits no problem. Then there are the rest of us, who no matter what have to fight like a pit bull (bitch) to even get noticed. It is a sheer beuqacratic maze of "MEDICAL TERRORISM!" that we have to go through. Yet when in 1965 and Johnson enacted the medicaid and Medicare programs, this was not so. Those who truely needed the help like those with MS were the ones that got the benefits. Sadly over the years congress has turned a blind eye on who they are helping. It turns out they help the insurance companies who give them campaign contributions. If congress critters had to have the same health care we the people have, it might look different to them. I do not care what party a politician is, they need a good enema to start each day to get the shit out of the way early and face reality in it's real forms. I'm angry and this supposed well meaning article about keeping what constitutes health care in place as it is today, is a huge steaming pile of male bovine exhaust. Nothing is going to change until we have insurance reform. we didn't need health care reform, but insurance reform. I'll stand nose to nose and debate the issue in person with any person. I've been there and still am fighting for my son. Each day brings new complications not to his health, but to his coverage. He was not diagnosed until his MS was so far advanced he couldn't walk, and was in the hospital fighting for his life. All due to insurance mandates. He went from vital to invalid. Now tell me I should make a phone call to keep what put him in a wheelchair with it's unresponsive benefits programs!!!!!!!!!

Cathy B. avatar

Cathy B.

I'm confused by the onset of your article as everything I have heard and read since Trump was elected is that no one, no matter which party, wants to eliminate pre-existing conditions. Yes, we need a solution to healthcare and we all need to focus on what's best for everyone. It's great you shared the steps to write your elected officials and follow up with them as it can be a very overwhelming process.

Mike Knight avatar

Mike Knight

Hi Cathy, and thanks. I don't think either party would explicitly eliminate pre-existing conditions (politically impossible), rather that repeal and replacement plans I've seen (including this one from Sen. Cruz) would make it harder for us to get coverage: http://www.politifact.com/truth-o-meter/article/2017/jul/17/cruz-amendment-preexisting-conditions-fact-sheet/ All of this is confusing and overwhelming to me, too. I'm not convinced that it has to be this hard (I don't believe it is in other systems but I might be wrong). https://www.theatlantic.com/health/archive/2017/07/us-worst-health-care-commonwealth-2017-report/533634/

Linda Fitch avatar

Linda Fitch

There is no ACA in reality as it is a miserable failure. The insurance industry's continual pull outs have made it unworkable. It doesn't matter what happens in the congress or senate, the ACA or better known As obomacare is dying on its own which is why neither party wants to touch it with a ten foot poll! What we need is healthcare reform which was never done! I myself have been a victim of the system, not being able to afford my treatment for my MS due to a confusing, convoluted, red-taped self serving health care industry even though I supposedly have government sponsored healthcare coverage. It is all a joke, I can only guess Mike you have not experienced it to speak so highly of it. Since my husband retired and I lost my healthcare through his job it has been a nightmare and the ACA has not provided an answer nor has Medicare.

Mike Knight avatar

Mike Knight

Hello, Linda, and thanks. I agree a true, real bi-partisan rebuild is in order but I'm not sure how we'll get there (https://www.theatlantic.com/health/archive/2017/07/us-worst-health-care-commonwealth-2017-report/533634/).

In the meantime I'm concerned that those of us with preexisting conditions lose whatever protection the ACA currently affords (http://www.politifact.com/truth-o-meter/article/2017/jul/17/cruz-amendment-preexisting-conditions-fact-sheet/).

You're correct, I haven't used the ACA, my wife is clinging to a job in very large part for the insurance. Like you, there was a time in my life (and unbeknownst to me at the time, my MS) that having decent insurance would have been *very* beneficial and I might have been diagnosed 10+ years earlier than I was.

I know others who are making life decisions based on their ability to get company-paid health insurance. I would like to see us honestly and seriously consider a single-payer system.

Mr Perry avatar

Mr Perry

This column by Mr Knight is misleading and provides incorrect info. Providing incorrect information as facts or worse to simply be ignorant of the "facts" stated in this article is of no help to any MS patient. In Mike's defense much of information out there can be be confusing, here are some simple facts that are true: with links at the end of this comment for reference.

-The CBO (Congressional Budget Office) is historically inaccurate with their projections regarding healthcare and other projections dating back before Obamacare, including Obamacare projections, and now the GOP bills.

- Not one version of the repeal bills removes access to healthcare from people with pre-existing conditions, nor do any of them attempt to deny access to those with pre-existing conditions

- Medicaid funding is increased in all of the GOP bills, the rate of increase simply declines as projected costs, (years ahead) decline.

Where Mike is right is you should reach out and contact both of your state Senators AND your local House Rep, let them know your concerns regarding healthcare as an MS patient and inform them you will continue to contact them until they address your concerns. BTW, forget about political party, as an MS patient, there is no "magic bullet" to better care for those of us with MS. You will not suddenly be "saved" by the current and any future healthcare bill. The likely best option for MS sufferers is an addendum or future bill that addresses MS and its sufferers directly. This will only happen after you have contacted your state and local reps many times as well as the MS Society and related groups follow and get on board. The greasy wheel and power in numbers theories apply here, only that will turn the tide.
You may also want to write former First Lady Michelle Obama, for whatever reason she did not address MS as First Lady even though her father was a sufferer. You should encourage her to do so as a former First Lady in her public advocacy after leaving the White House. She is universally liked and would provide a huge voice that would fast track awareness and influence on our reprentatives in DC. If she did it together with Ann Romney the power would increase greatly.

Having said all this there is no real help for lowering the cost of healthcare for MS patients in ANY healthcare reform. Only addressing the waste and fake inflation of the price of healthcare services will do that.

FWIW - I just received my bill from my initial Ocrevus infusions, I was charged $24 for 2 Benadryl's (you can get 2 benadryl in any store for as little as 17-75 cents). There are 13 MRI machines in 10 mile radius from my house. If you say the magic words "private pay" or " I have no Insurance" an MRI is $600. My insurance co would pay them $758 - the MRI provider would bill $1800 per MRI - when I had insurance 2 MRI's were denied and I was responsible for 2 MRI's at $1800 each. You see that alphabet-sized "approval #" wasn't approval to actually pay according to my insurer. And of course my insurance, which I had for years prior being diagnosed with MS was cancelled under the ACA (Obamacare). The ACA compliant plan offered to me came with a $200 a month premium increase and a new $8k deductible.




Mike Knight avatar

Mike Knight

Thanks, Mr Perry, I agree with a number of your points. It *is* confusing, I agree there isn't a magic bullet for curing our healthcare system and the ACA as it currently stands needs significant improvement. Or a true bi-partisan rebuild. My biggest concern is that repeal and replacement proposals woulld be meaningful setbacks with those of us with MS and other chronic conditions (http://www.politifact.com/truth-o-meter/article/2017/jul/17/cruz-amendment-preexisting-conditions-fact-sheet/) as Sen. Cruz seems to be influential in this process.

Susan Schlindwein avatar

Susan Schlindwein

The liberal slant on this website when it comes to healthcare is getting on my nerves. MS doesn't discriminate based on socio-economic stand, and ACA doesn't help many of us. How about affordable healthcare for all?

Mike Knight avatar

Mike Knight

THanks, Susan, I appreciate your perspective! I know the ACA has many significant shortcomings and knew they were there since the bill was passed. I heartily support "healthcare for all" and believe other countries offer direction and models we might study and borrow from to build a far more equitable and just approach were we able to work in cooperation. Healthcare (or the ability to get meaningful, actionable insurance) has become part of far too many long-reaching life-decisions for too many people and in my opinion, it shouldn't be that way.

Mike Rehak avatar

Mike Rehak

You are taking a partisan stance on a controvercial topic, which I think is very unfair to the MS community and is not in our best interests. Where were you when Obamacare passed to urge us to contact our government officials to say that it will be the disaster it is today? Dont give us steps to promote your political agenda. We dont want to hear from or contribute to political ideaology. That is all you are saying and it is not factual and goes alongside the same failed liberal rhetoric that tripled MY premiums and costs.

Mike Knight avatar

Mike Knight

Thanks, Mike, I appreciate it. I know the ACA hasn't been as beneficial as it needs to be for you and so many others. My intent (and agenda) isn't to defend the ACA, I've believed all along that it had significant problems (and had them before it was passed). My column was motivated by concern that millions of people -- many aging into the last 10 years of their careers and earning power as the tail end of the Boomer generation ages out -- could be left without insurance, high costs to obtain it and the associated loss of protection to those with pre-existing conditions. I think we can do better than what's being proposed and better than what's currently in place.


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