Accessing health insurance

Since my multiple sclerosis diagnosis in 1997, I have been mostly uninsured. Before my diagnosis, I worked as a bank trust officer. I bought a minority share in a private business in the mid 1990’s. This did not work out, I wasn't able to get back into my former profession, and I was also unable to secure a position in a related field that would provide health insurance coverage.

Being uninsured, I typically self-pay for most of my medical treatment. As a person with MS, I’m sure I don’t have to tell you how expensive this can be. Thankfully, I have been able to receive my disease modifying therapy (DMT) at a reduced cost through a patient assistance program. If this program didn’t exist as a safety net, who knows where my disease would be today without treatment to slow its progression.

For me, the Affordable Care Act (ACA) means a chance to finally be able to afford insurance. Before the law was passed in 2010, my diagnosis was considered a pre-existing condition, which meant that when I was diagnosed with MS, insurance either became completely unaffordable or completely unavailable. The ACA prohibits insurers from discriminating against people with pre-existing conditions in this manner — first for children and more recently for adults. Because of these changes, in 2014, I will be able to afford insurance for the first time in 17 years.

When the Health Insurance Marketplace first launched on October 1, I went to to enroll, but like many others reported in the news, I had a pretty frustrating experience at first. After looking at the site and making a bunch of phone calls to try and get my questions answered, I decided to broaden my search to include individual insurance company websites. I went to one of the Nebraska company sites and found out that one of their policies covered my doctors and my DMT. This was a huge breakthrough in the process for me!

The very same day, I received a letter from my current patient assistance program, advising me that they had people who could help me with the Health Insurance Marketplace application process and that I could call them directly for support. All of this to say, the information is out there — you may just have to do a little digging. The best news is that once I had the right information, I returned to and successfully enrolled in the plan I had identified that gives me access to my current medication and doctors. Now, I’m working through the payment process, making sure that there are no coverage lapses and getting prior authorization from my doctor.

I’m beyond excited to have health coverage for the first time in 17 years. I will keep you posted on my progress in future blog posts. If you’re in the same boat as me and are looking for or have gotten coverage through the Marketplace, please share your experiences and tips in the comments section below.

-John R. O'Neal II

John is a former self-help group leader and National MS Society Nebraska chapter board member. He has been active in advocacy for the Society for 15 years and is a member of the Mid America Chapter’s Government Relations Committee. He is a retired lawyer and bank trust officer. He became a vegetarian in the last year to help him lose weight and improve his cardiovascular health, and he has lost 25 pounds and feels better since the change.

Editor's Note: To purchase coverage for 2014 through the Health Insurance Marketplace, you can enroll during Open Enrollment — now through March 31, 2014. If you miss the initial Open Enrollment opportunity, you will have to wait for next year's annual Open Enrollment unless you qualify for Special Enrollment due to certain circumstances such as getting married or having a baby. For coverage to begin on January 1, 2014, you must enroll by December 23, 2013. For more information about the Health Insurance Marketplace and the Affordable Care Act, click here.
Tags Activism & Advocacy, Insurance & Money Matters      6 Appreciate this
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  • Louise   Dec 20, 2013 12:55 PM
    Same here !!! My husband was diagnosed 2 years ago and since that have been really hard on insurance ! No insurance because none would accept us ! I dont care what people say about Obama, that was such a awesome decision that will benefit tons of people !!!!
  • Avatar
    Bobo  Dec 20, 2013 1:30 PM
    Good to hear that you've been successful in the insurance process-way to go! Cheers!
  • LAURIE   Dec 20, 2013 1:40 PM
    I HAVE BEEN HAPPY WITH MY HEALTH INSURANCE SINCE I was diagnosed but now I am thinking long term I do not have socal security since I was a public employee I will do the research if things change
  • Debbie   Dec 20, 2013 1:44 PM
    I have insurance through my husband's employer. The problem we run into is we still can't afford medical care because our income isn't enough to pay the copays, deductibles, and coinsurance. Is anyone else having this problem even with the ACA?
  • Patrice   Dec 20, 2013 7:26 PM
    The first thing is Yes it will be nice when pre-existing conditions are accepted, because I'm not able to get insurance. Was dx in 2007 had insurance until 2010 and have had no insurance, meds etc since then. My state put a freeze on individuals trying to get insurance, so I was always denied. Signed up for ACA which switched me to our state insurance due to income and was denied until January 2014 when the new initiatives goes thru and it will reapply. So have to wait until then :). Hopefully I will be accepted because there is no way I would be able to afford what the ACA has for prices, even under catastrophic; plus found out yes you can see a doctor etc for appointments or emergencies and what not but you have to pay the full amount of your deductible before anything (which could be $6,000 or more depending on the plan). It is not like before when you pay your co-pays and it whittles down your deductible. So all in all I hope I get accepted to state insurance can't afford the ACA.
  • Jeff   Dec 21, 2013 12:13 PM
    I understand your frustrations. I was dxd in 1977. The company I worked for imploded in 1988 and I have be without insurance until I qualified for SS and Medicare in 2003.

    Yes, by all means sign up for ACA!!! Get the most you can afford; your expenses are not going to get any cheaper. If I had had that since 1988 I could have saved many thousands of dollars and many sleepless nights! Thank you Biogen and the other companies with Patience Assistance Programs, and shame on those that don't have them.

    I went through all the Insurance companies to no avail. (It was very distressing when applying for insurance with this preexisting condition. To hear a computer laugh at you: "you want what....????" is very embarrassing. ;-)

    ACA is going to have problems, and it will take a while to iron them all out. But this is a new system, so expect that. I've always thought that they could have modified Medicare easier than developing this whole new system; the doctors knew it, the procedures were already in place, the software worked. But nobody ever listens to me, sigh.
  • Avatar
    Visus  Dec 21, 2013 4:20 PM
    Multiple Sclerosis Letter

    This is a letter of hope to anyone who has or knows someone with multiple sclerosis. I wasn’t aware that this could happen until I witnessed it happening to someone else with MS. So yes, this is a true story.
    About twelve years ago and not long after my own MS diagnosis I was volunteering at a thrift store for animal welfare on Whidbey Island in Washington State. The day I started I also found out that there was another volunteer who also had this yucky disease. And she was much worse off then I was. She described her disease as being responsible for her being blind in one eye and nearly blind in the other. She had to use braces to walk and even then it was extremely difficult. She said that she was always in pain and because of the numbness in both of her feet she hadn’t been able to feel anything in either foot for fourteen years.
    We talked quite a bit about our conditions so it didn’t surprise me when she came in one day and said that when she woke up that morning she felt different. When I asked what she meant by different she couldn’t really give me an answer other then she felt different. Little did either of us realize the miracle that was about to take place.
    About two weeks after our conversation she was in a complete remission. Her eye sight in both eyes had returned to 20/20. She had full feeling in both of her feet and no longer needed her braces because she could walk just fine without them.
    When I asked my Neurologist about this he stated, “Yes spontaneous remission is possible, but it’s very rare, so I wouldn’t get my hopes up to much.”
    I was like, are you kidding, sometimes hope is all people with MS have. And let’s put this into perspective. If MS can turn itself off almost as fast as it can come on then that means that there is some kind of a mechanism controlling it. And if we can find that switch then I could care less whether I have the disease or not as long as it stays turned off!
    And this gives me tremendous hope regardless of how rare it might be!

    Bill Walker
    7950 Chisholm Trail
    Maple Falls, WA 98266 360-599-2316
  • John O'Neal   Jan 3, 2014 5:24 AM
    Thanks for the nice comments on my article. I hope everyone who needs insurance was able to sign up in time to get coverage by January 1. On January 2 I went to my pharmacy to pick up a couple of prescriptions unrelated to my MS, used my new insurance card, and IT WORKED! Meds that would have cost me $64 out of my own pocket before, now were $12.50. Thank you to everyone who helped pass the Affordable Care Act.
  • dmoore192  Feb 10, 2014 8:44 PM
    Unfortunately some health carriers, like mine BCBSNC has excluded my Betaseron from their drug formulary. It costs $4400.00 a month for 15 shots. My neurologist is appealing. My healthcare costs 700.00. I wonder what's the point...but my family is covered because my husband is self employed. Has anyone out there tried Extavia?
  • John O'Neal   Mar 14, 2014 1:51 PM
    Here's the rest of my story. I appealed my insurance company's decision not to pay for my Betaseron. They wanted me to go on a different drug. I told them in my appeal letter that Betaseron had been working for me for 10+ years, and that trying a different drug would be like trying an experimental therapy for me. They agreed with my appeal, and are now paying for my Betaseron.
  • John O'Neal   Mar 14, 2014 1:51 PM
    Here's the rest of my story. I appealed my insurance company's decision not to pay for my Betaseron. They wanted me to go on a different drug. I told them in my appeal letter that Betaseron had been working for me for 10+ years, and that trying a different drug would be like trying an experimental therapy for me. They agreed with my appeal, and are now paying for my Betaseron.
  • Towanda   Nov 3, 2017 7:49 AM
    Shot Down Again..THIS Time, by Discriminatory, Social Security Disability Judge!

    I am so weary from my MS that I stopped working four years ago. And I filed an SSD claim, with the help of Myler Disability. I was rejected twice, but rejoiced when finally "winning" a long-awaited, hearing before an administrative law judge. But Judge Costa used my invisible MS against me. He wrote in his rejection that I am not disabled. After all, I have completed a PhD-level degree on-line. (I did that over an 8-year time period, and with my university eventually recognizing me as a disabled student who needs more time to complete assignments). Judge Costa also harped on how I care for my husband and our two teenaged kids who have disabilities. (Never mind that, once again, I achieve these family tasks at a slow pace, not on some workplace time clock. I am able to rest on my couch after exerting energy to care for my family. And I perform tasks bit by bit, over the course of hours, even days.
    Judge Costa really annoyed me with his writings of me "biking," "shopping," and going to the beauty parlor. I mentioned the beauty parlor after I was asked about whether I have problems doing my hair. I revealed that I probably would, since I can't even cook and clean. But I don't have to worry about doing my hair, I added, since my kids and I go to a local beauty parlor once every two weeks. And my biking is greatly modified; I do that ONLY on my stationary bike here at home, at 10-minute intervals, four times every day! As for the "shopping," it is grocery shopping, at our local ShopRite supermarket!
    As I reflect on Judge Costa's decision - which arrived in mailbox on Halloween - I see I may have been discriminated against for my "invisible," but very real disability! And of course, Judge Costa did NOT dwell on my OTHER health problems - depression, incontinence, anemia, and weariness. I also got diagnoses a few days ago, of high cholesterol and Sugar Diabetes.
    Any suggestions for how I should proceed? I CANNOT work, despite Judge Costa's position, and I must now find a lawyer willing to keep fighting for my SSD benefits, beyond this judge appeal level. I have an appointment scheduled with a lawyer in my area for this Thursday. And a second lawyer has asked me to send the decision to him. But perhaps, you know of other actions/lawyers I should pursue?