CHRONIC TONIC posts on Thursdays at 9 p.m. EST, it is a place to share stories, advice, and information and to connect with others with chronic health conditions and those who care for them. Our diarists will report on research, alternative treatments, clinical trials, and health insurance issues through personal stories. You are invited to share in comments (and note if you'd like to be a future diarist).
Tonight's diary by: MsSpentyouth
Welcome to Chronic Tonic! The occasion is nothing if not serendipitous: I received an invitation to host Chronic Tonic while I was in the waiting room at the very last doctor appointment my health insurance would cover. How could I say no to a gift like that?
Please do take the opportunity to host this amazing little gathering. It may not come at the best of times, but that's often the time we need to reach out or to take someone's hand, to vent or to listen to someone who needs a good venting. Take a look at the dates below and sign up for one. It'll be the perfect timing -- if not for you, perhaps for someone who's tuned in that particular night.
So. Yesterday began just like most any other day: there was a gorgeous sunrise, and the weather was ungodly hot, and I had oatmeal with dried cranberries for breakfast. There were pooties to feed and a garden to water and fuss with, and it wasn't until noontime that I remembered that I don't have health insurance anymore.
I knew it was coming; May was the last month of my paid COBRA coverage that was sum and total of my severance package when scores of us were laid off in 2010 from our public-schools jobs. There is no way I can afford the COBRA payments on my own, and I've known since February that North Carolina's high-risk insurance subsidy pool is out of funds for 2011. So this wasn't a surprise.
I prepared. I'd been trick-or-treating over the past few weeks with my docs for medication samples; I transferred all my prescriptions to patient assistance programs, discount mail-order pharmacies, a Canadian pharmacy, etc. I filled out all the paperwork to renew my membership in the Poverty Case of the Month Club at the local emergency rooms and hospitals; some local clinics also have patient-assistance programs, too, and with 17 current docs/specialists, I just about blanketed the entire county with application forms. Nobody said that having an inoperable pituitary tumor and crashed immune system were going to keep me idle.
Many of you know what it's like to apply for disability. It's a job unto itself. When it was utterly and absolutely clear I was no longer particularly employable (well, to be honest, it was probably clear to others long before!), I applied last year and am in the appeals process. (Because, of course, having a tumor in your skull and being sick with such goodies as pneumonia, systemic candidiasis, and leukocytosis from chronic anemia every other week is no reason not to get to work, dammit!!! There should be a support group just for Social Security Disability applicants. That's about all I can say about this without requiring another mojito.)
My primary-care doc is awesome, and we had some long talks about contingency plans. One was to transfer my records to a another practice, Access Healthcare, which doesn't work with insurance companies and thus can offer quality medical care that's actually affordable. Sure, that's not going to stand in for the neurologist, cardiologist, neurosurgeon, pulmonary specialist, voice therapist, rheumatologist, et al., but they can cover many situations. And all the staff there are really good.
Is there a similar practice in your area?
You probably know all about prescription assistance programs. Here are some of my favorite places to start.
Rx Assist: Their searchable database will spit you out a matrix of the medications you are taking and whom to contact for assistance with copays, discount meds, or even free meds. The matrix you receive provides clickable links to each program's online application form (if available) or PDFs.
NeedyMeds offers most of the same features as Rx Assist. Their drug discount card can even save you money on over-the-counter medications. NeedyMeds also has some really neat one-stop-shopping pages for specific diseases, such as asthma, fibromyalgia, Lyme disease, and several types of cancer.
Xubex: They offer a number of programs, including free 30-day supplies of certain meds, discount mail-order services, and copay assistance. Their customer service is excellent, and they will contact your doctor and/or transferring pharmacy for you.
Individual pharmaceutical company programs: Pretty much all major (and minor) pharmaceutical firms offer assistance programs. If you're taking a medication that doesn't have a generic that you can fill for $4-10 via Target, Walgreen, or many other retail pharmacies, contact the manufacturer and see whether they have an assistance program. I'm getting most of my asthma meds that way.
HealthWell Foundation: HealthWell addresses the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments. If you have insurance but can't afford your copays, search their list of eligible illnesses/diseases and give them a call or apply online. Eligible patients are either reimbursed for copays or receive a debit card that can be used at pharmacies for covered medications. (Their website is a little wonky right now, as they're upgrading their services. Just keep checking back, or give them a call. They're really pretty awesome to work with.)
I'm kind of running out of steam here, but I know you have suggestions to add to this list of resources, and I'm eager to get to them.
It may seem overwhelming to complete all the application forms and keep track of everything. Consider hosting a little gathering with a couple close friends and ask them to help you get started on the form-filling-outing and envelope-addressing. And maybe you have a great daughter like mine who'll set up a file box for you and fill it with handy stuff, such as several copies of your tax forms, income statements, and other documentation that's often required for these applications.
Another thing that works great for me is to keep track of my medications and applicable assistance programs via a Google Doc that I share with my daughter (who has my durable power of attorney). That way, we can both keep up with what I'm taking, why, how much, who prescribes it, when to take it, and who's dispensing it at what price for how many doses.
I share with my daughter another Google Doc with a list of all my docs and who's seeing me for what, along with a note about the most recent visit.
And one more time before I go, my primary-care doc is awesome. For realsies. Yesterday was my first day without health insurance, so he called last night just to check on The Contigency Plan and to ask whether there are any last meds I need called in somewhere. He also reminded me that I can call or email him anytime, off the books.
Life without health insurance. So far, so good. There's a lot to be learned in coming days, but I know I'm not out here on my own.
We want you!!
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