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The insurance trap

The Insurance Trap

December brings a lot of milestones including the Christmas and Hanukah holidays, the Winter Solstice, and New Year’s Eve with its endless “Best Of” lists and unrealistic resolutions for the coming year. Equally ubiquitous are deadlines for making commitments for the coming year’s health insurance. Whether you’re covered by your company’s insurance (I’m not), purchasing health insurance on your own (that’s me), or by Medicare, you have to make important decisions that will impact both your health and your pocketbook for the next 12 months.

I’m in a weird place with insurance at the moment and will be for the foreseeable future. I am self-employed and while I have a lot of flexibility while still being able to work what is essentially part-time, it means that I’m not covered by an employer’s health insurance plan. For reasons that are immaterial to this article, I’m also not eligible to be covered by my husband’s company plan. This means that I have to purchase a private plan. I make too much money to get a rebate on the government plans, so I purchase my health insurance directly from the insurance company. Given the fact that I have RA and take expensive biologic drugs, have frequent specialists visits, usually have multiple joint injections or other procedures, and am probably looking at some type of surgery in 2015, I need a very robust plan. My already-expensive insurance premium for 2015 went up 15% to more than $1000/month. And while there are less-expensive policies, by the time you factor in the high deductibles and the co-pays, I’m better off paying the high monthly premium.

The good news is that under the current legal landscape I cannot be denied health insurance, otherwise I would fall into the high-risk insurance pool with minimal coverage offered by the state.

The bad news is I have to keep working in order to keep making insurance payments. My schedule is very light by anyone’s standards but, even so, there are periods of 12-14 hour days and intense stress. Stress increases RA’s effects. Given the choice, I would retire completely and be able to better manage my health. But then I wouldn’t be able to afford the health insurance I need.

I’m trapped into working by need to pay for insurance.

But there are also other hidden traps. For example, after a year of experience in the new marketplace, the insurance companies are learning how to manage their costs. Among other things, they’re reclassifying some of the more expensive drugs into different tiers or taking them off their formulary lists altogether. Drugs that used to cost RA patients a small copay may cost them thousands of dollars a month in 2015.

I am in the unenviable position of change drug therapies (again). My old drug was covered by my insurance. I don’t know whether my new drug will be covered or not. The specialty pharmacy is currently processing the paperwork with the insurance company. Checking the insurance company website is not encouraging, but the information is limited and it may be that there is a step-therapy or other conditions required. Hopefully I will find out this week what the situation is.

If I wasn’t too big to sit on Santa’s knee, I would have told him that all I want for Christmas is a new RA drug (that works and is covered by insurance). Is that too much to ask?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Carla Kienast author
    5 years ago

    Hi Jane. Yes, counting my blessings and am especially thankful that I (and others with chronic diseases) can’t be denied insurance for pre-existing conditions. Thanks for reading the article and for taking time to respond. Insurance should be a conversation.

  • Jane Burbach
    5 years ago

    Carla,

    I am a fairly liberal person concerning health care and believe it is a right for all citizens, not a privilege. I didn’t realize that people are still put into high-risk pools under ACA, which didn’t go far enough. Hopefully a step in the right direction.

    The whole disability aspect is appalling too. If you can’t work, you better hope you have money and a support system. Then you have to wait two years for Medicare. Better late than never perhaps.

    As a person who is self-employed and works really hard, I know what it is like to be disabled due to an RA flare. Mine have become progressively worse over the years. Therefore, these issues weigh on my mind though I am better now.

    I don’t know what to say other than it’s a blessing you can still work to pay for insurance.

  • Davida Jones
    5 years ago

    Carla,

    I will be starting my third biologic in about a week. I have been on Humira and Enbrel. Neither worked for me, but did cause other damage to my body. I took methotrexate along with prednisone, Neurotin and Enbrel in the beginning. But I went into Kidney failure several times and was immediately taken off the methortrexate. The Enbrel seemed to make my symptoms worse. So my doctor wanted to put me on the Orencia, but my insurance denied that until I tried at least one other biologic. So, I went on Humira, which is almost Identical to Enbrel. Same results. So now,my insurance will pay for the Orencia and I am only waiting for it to be shipped to me, and it will take about a week before I can start it, because I have already injected myself with the Humira, and you have to wait two weeks in between injections. I am staying positive,or I am trying to be. I am 48 years old. I was missed diagnosed for many years until August of 2013. I was then hit with a lot. I was in the hospital for over ten days and I had every thing done to me. When I was given my diagnosis, I was given several of them at one time. I found out that I not only had RA, but after ruling out MS, they did find the anti body in my blood showing that I had the most agressive type of RA. I was told that they cannot be for sure, but said that I could have been walking around with RA for many years before I experienced any symptoms. Which was exactly what happened. I had symptoms of being tired all the time and feeling like I never got enough sleep, but as far as pain, nothing I could not tolerate. Then one day I went to work, I was feeling a bit foggy headed that day, and after a short time at work, my body went into uncontrollable tremors, I was unbearable pain, and I could not walk. Just like that. So, after being told about the RA, then I was told that the sores that were present all over my feet and legs were psoriasis, that were very bad, then I was told that I had Hypothyroidism. Then I was told that I also had osteoarthritis, and how careful I had to be because my bones were so brittle. I got all this news in the matter of an hour after a lengthy stay in the hospital, to where at the time they controlled the pain, did put me on an anti biotic and on the steroids right away. Now that I had my diagnosis, then they changed the treatment plan. So, I know that it takes time sometimes months before your body even responds to the medication. But I understand how frustrating it can be to just wait. It is easy for someone who does not live their life everyday in some sort of pain, but other days the pain is so bad the I feel I cannot breathe. But I refuse to allow my disease to control me. It make kick my back side on certain days, but I get back up and go on and that is what we all have to do. I hope that one day they find a cure for this disease or at least better treatment options. When I was able to intake marijuana, I got more benefit from that I have from the steroid, biologic the neurotin combined. It made my pain more tolerable as well. But I live in Florida, and it is not legal here, but we are slowly making progress. Fingers crossed, I stand up to be a voice for these terrible disease. Whatever my body allows me to do, I do. Good luck on your journey my friend.

  • Carla Kienast author
    5 years ago

    Davida: What an amazing story. It seems like you have all the worst experienced rolled into one — misdiagnosis, reactions to medications, medications not working, etc. etc. etc. — the list goes on. I admire your perseverance and outlook. Sending you the best along with hopes that Orencia is the answer for you. Good luck! Please come back and let us know how you’re doing.

  • Davida Jones
    5 years ago

    Sarah,
    I just wanted to let you know that before I was totally disabled, which was in July, 2014, I was unable to continue working since November 2013, I can offer my assistance with any insurance information that you may want to know. That is what I did for a living for the past 27 years. It is hard for a lot of people to understand Obama Care, and it has gotten a lot of bad reviews. But I truly believe that is because people do not understand how to make the insurance work for you. I found that Obama Care was much cheaper for me then it would have been to be on Cobra from my ex-employer. I can see why you are in a catch 22. With your spouse making, as you stated a decent income, you may have found that you do not qualify for a tax credit on your premiums through Obama Care. You may want to talk to your doctor, because the biologic s that we take are so very expensive. Each of the biologic s have there own patient assistant programs to assist people that are in circumstances that you are in. I would talk to my treating doctor about this.

  • Sarah
    5 years ago

    Try calling the drug company. I have been in the same place more than once. We have the same issue with income; he most expensive drugs–the biologic infusions and injects are insane. However, even though my husband has a nice salary, no way could we afford the Actemra injections I tried recently. (Took for 3 months, didn’t work.) Out of pocket would have been about 4000 per month because my insurance wouldn’t cover it. (They covered everything else no problem. Why that I don’t know.) So I called Genentec; the gave me a 3 month supply completely free. No co-insurance, no-copay, no crap-load of paperwork. I had it 2 days after calling. Drug companies aren’t perfect, but not nearly as greedy and evil as many people believe.

  • Carla Kienast author
    5 years ago

    Hi Sarah: Thanks for sharing your story and the great idea of contacting the drug company directly. My good news is that since I wrote this story, my insurance company did cover my new RA drugs (now if it will only work!).

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