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

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!!!!!!!!!

Mike,
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,
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.

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.

https://economics21.org/html/cbo-scores-obamacare-rollback-have-been-nothing-fantasy-2473.html

https://www.realclearpolitics.com/articles/2016/12/28/the_myth_of_pre-existing_conditions_132654.html?_escaped_fragment_=#!

https://www.usatoday.com/story/life/2015/11/15/ann-romney-spearheads-landmark-ms-study/75458922/

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.