Hear My Story: I Survived Cancer, Only to Be Denied Insurance

 Health care reform is a women's issue. Why? Because well-being and caregiving are so closely linked.

Like it or not, much of the burden of caregiving falls on the shoulders of women. We might have legal responsibility for an aged parent or a mentally or physically disabled sibling. We might be parents ourselves. Whether a single woman or partnered, we are there for our women friends and community members to support, encourage, comfort, celebrate, and rabble rouse together...keeping each other sane.

With Hear My Story, MOMocrats launches a series that highlights the personal stories of women who support health insurance reform because they know the existing system is broken. And they've fallen through the cracks--or come close--and survived to tell about it. It's direct, concrete experience, painful and difficult--filled with the kind of worries that make your nights sleepless and long. Maybe you can relate.

Here's the story of Jennic Law, a small business owner at KangaRooBoo.com who started a children's toy company specializing in non-toxic, educational toys and games.

I voted for President Obama. I am hopeful that he WILL provide those of us with “pre-existing conditions” an affordable way to obtain health care coverage. Yes, he will. His mother was discriminated against due to her own medical conditions – he would be one to understand even if no one else does.

    I am a cancer survivor. I am currently living in a health care nightmare and have been for almost 2 years. I have no health coverage. I am a married 32 years old small business owner with 2 children under 6 years old living in the midwest.

    I had cancer 9 years ago. I was freshly graduated from college and a newlywed of 24 years old at the time of diagnosis. There are no cancer histories in my family, but what I had was “the best kind of cancer to have” if there ever was such a thing – Hodgkin’s disease – right up there at the top with testicular cancer. I was working for a company with group plans and thank goodness that insurance paid for all treatment-related costs. Miraculously we were able to have 2 healthy kids a few years after all the treatments. During a company restructuring, I was laid off when I was pregnant with our youngest. I didn’t bother looking for a job, I presumed no one would hire a visibly pregnant woman. I stayed home a couple of years as a Stay At Home Mom. Fortunately my husband was in a group plan with the employer he worked for at the time, so health care coverage was not a huge issue.
    Fast forward to December 2006 when my husband got laid off. We were all out of health care. We got on COBRA and paid all 18-months of it (because we decided to be self-employed), exhausting it and a lot of our savings as well. After our family COBRA plan exhausted, my husband and kids got on private individual health insurance – they are all healthy and low risk so no problems – any insurance company would gladly take them without a whimper. We pay for it ourselves; it’s pretty reasonable monthly premiums with not so reasonable 80/20 co-insurance and $2500 deductible.
    The kids and husband have medical coverage. I, on the other hand, have been denied health care at every insurance company except HIP. “Fortunately” the state that we are living in has HIP. And as you may know, HIP is for those of us who are un-insurable anywhere else. We are blacklisted as “high risk” and “high liability” and "untouchables."
    Never mind the fact that the cancer I had is coined the “best cancer to have” medically and has one of the highest CURE rate of all cancers, never mind that I have been in remission for almost 8 years, never mind that I have been healthy all these past 7+ years, and never mind that I incurred less than $1000 of total medical costs while I was on COBRA for the entire 18 months duration.
    These are things all the insurance companies tells me: NO CAN DO. You had cancer? You mentioned “cancer?” Tough luck. No insurance for you. Take a walk, have a nice day.
    HIP is an option. HIP is the *only* option. However, HIP wants $700/month with $2500 deductible, 80/20 and a bunch of other limitations. Just for MYSELF.
    I can’t breathe.
    I can’t afford that. So I don’t have HIP. I don’t have health care coverage.
 After my chemotherapy and radiation therapy ended 8 years ago, all of my oncologists advised that I start having mammograms after I turn 30, because the bulk of radiation was delivered to my chest and neck area. It is very rare, but the radiation could potentially make me more susceptible to develop breast cancer in the future. So it is recommended I get a mammogram baseline when I turned 30. I will be turning 33 very soon and I have not had one. I do feel fine though. However, I was also “fine” for my whole life except the 5 months leading up to my cancer diagnose.

[Left, extraordinarily expensive Neupogen shots (white blood cell boosters) used during chemotherapy. Cost: approximately $400 a bottle (the height of a quarter or so in size only!) and I needed 4 bottles every 2 weeks for 6 months. That's $9,600 of drugs doing the sole purpose of boosting my white blood cells during chemotherapy, not even the chemo drugs itself. All covered by insurance through an ex-employer. I wouldn't have been able to afford the medicine if I did not have insurance.]

    I am willing to pay for the entire cost of the mammogram out of pocket – what I AM afraid of and the very reason why I’m not getting the mammogram yet is, what if the result shows something bad? How will I pay for the treatments?! For I am without health care coverage, and if it does come back with bad results, I would have yet one MORE “pre-existing condition”…
    Even if I start paying for HIP now, which I cannot afford, I will not be covered for anything significant for at least a year. I also do not qualify for medicaid, because we have more than $2000 in assets.
    So, no mammograms for me.
    It’s infuriating knowing that the US, one of the wealthiest nations in the world, is the only developed, civilized country where affordable health care is not easily accessible. Even friends in Thailand have that luxury. I have friends living in Canada, Sweden and England as well, all of them are very happy with the system. One of them had cancer and then a recurrence one year later--she received great care and even 18 months of fully paid leave from her job during treatments. All three of them tell me that on top of their national health systems, everyone and anyone has the option of purchasing additional private health insurance if desired but none of them choose to.
    A lot of people in the US depend on their jobs to have health coverage, a lot of people are without that health coverage nowadays because they have lost that job, and a lot of people who do still have jobs are afraid to start businesses not because they don’t have great ideas or grand dreams but because they will be without health care coverage.

    It was very discouraging when my husband was laid off 2 weeks prior to Christmas in 2006, and it propelled us to start our own business sooner than planned. We are not rich by any means – we’re 2nd generation immigrants with not much of anything materially – the money that we are using for our business is from selling our house and moving to a lower cost city. What we do have are big dreams, the entrepreneurial spirit, a lot of commitment and hard work. It’s not uncommon for us to work 7 days a week and 15 hour days.
    As a result of my cancer history, the current health care system (or lack thereof!) is not making entrepreneurship and owning a small business easy at all. For people like me with pre-existing conditions, health care reform is the only hope of getting any medical coverage. Whatever the plan will become, I'm certain it won't be perfect and will not fits everyone's situation perfectly, but for those millions and millions of uninsurables, at least we will get to be IN the waiting line. And that, is the beginning of a health care system for everyone, despite their income level, job, gender, ethnicity, or medical history, because we are looking after their well being and not their wallet.

Re-posted by Cynematic from a comment at Queen of Spain's blog, in which she asked her readers to send comments, stories, and questions to Valerie Jarrett, one of President Obama's advisors. Ms. Jarrett had made herself available to several women who attended BlogHer '09 to discuss health insurance reform. All comments were forwarded to Ms. Jarrett for her to read as Congress begins the last stretch of writing--and passng--health insurance reform legislation.

Comments

[Kristen]

Jennic,

So sorry for all of your difficulties. That must be so frightening and frustrating. The promise of affordable health care must be very encouraging though. We keep hearing about affordability but no one defines that. You said you were able to get coverage for $700 but that was more than you could afford. What do you think the target number should be?

[Sara]

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

Sara

http://smallbusinessgrant.info

[Anne]

Hi there,
I feel your pain. I am a 4 year breast cancer survivor. During treatment, I was still on COBRA from my previous job, so luckily all my medical expenses were covered (notwithstanding the very expensive monthly premiums). However, since then COBRA expired, and I have stayed at home to take care of my young son and recover. My husband is self employed, so we do not have covered through his work. Therefore, I am on Texas's High Risk Insurance pool, paying over $800/month with a $3000 deductible - just for myself. My husband and son were able to get private individual insurance. But like you, next to our mortgage, healthcare costs take the single biggest chunk out of our budget. Because of my cancer diagnosis, I haven't even bothered to try getting coverage for myself through a private plan. I may have to go back to work at a large company just so I can get access to coverage without being denied for my pre-existing condition.
I do feel lucky that Texas provides such a plan - I know many states do not.
Thanks and good luck.

[Helen]

Wow...unbelievable... I am 27 years old and I too was diagnosed with Hodgkins' Lymphoma at age 21, and as of this past December 31st lost my health coverage. I applied to two new places, one denied me the other one offered me health insurance for 1000$ a month... Alas I can't afford it because I am a full time college student. I also do not qualify for Medicaid because I own a home with my husband who is a full time college student as well. So what now.... from what I read my future with coverage looks dark, cold and grim. I've cried so much these past few days because I am supposed to get PET scans every year and they cost an average of 7000$. I don't even know what to think anymore. Its so sad.... I am a really good student with a 3.93 GPA uninsured and scared. When I had my treatment I was covered by my employer, now that I am in school I don't have that option anymore. If I get cancer again the system will rob me dry.

[Marybelle Perrigan]

Let's just all hope that a miracle will happen so we can all afford Medicare insurance plans. But as of now the cheapest way to improve our health is to eat nutritious foods and healthy supplements to keep us away from diseases. If we compare our time from the past, before there are less processed foods but now almost every day we eat processed foods which results to disease like cancer.

[tim]

I am in the exact same position. I had testicular cancer last year, I am cancer free now, however my life will always have a blemish from it. My insurance said that I was covered in a letter, and then a week later I got a letter saying please disregard the previous letter. I fought my way through chemotherapy only to be sidetracked with almost a quarter million dollars in debt. Now I have to be shamed by declaring bankruptcy. My girlfriend, whom I want to marry, is ashamed and the financial matters are putting a gigantic strain on our relationship. I have always been a cup half full type of person, but this situation is turning me into a negative person. Why, when we are one of the richest nations, do our people need to suffer these pains? The United Kingdom has socialized healthcare, Canada has it. Are Canada and The United Kingdom more progressive and forward thinking than we are as a nation? Or do they respect life more? All I know is that I truly have never thought negatively or been depressed about my life, however I am getting to that point. It makes you wonder what good life is if just to stay alive you have to live the rest of your life paying for it. I paid 5 years of premiums to this company and when the chips were down with my life on the line I was told "oh disregard that letter". I have never felt truly "less than" until you walk into a doctors office and say "I don't have insurance." This system is terrible, I am not saying everything would be bliss with socialized medicine, but it could not be any worse. I guess all I am saying is I understand your situation. I am empathetic and wish you the best. Let's hope that research can finally eradicate the disease in time to save other people from having to go through the hell that is chemotherapy.