A Little Detour...

It’s been a while since I’ve updated, and the next installment of the diagnosis saga is coming soon. But I would like to take a little detour to talk about one of the tough realities of living with a chronic disease, one we are facing right now.

Health insurance.

For the past twelve months, Nick has carried our health insurance through his employer. And it’s been WONDERFUL! The coverage is amazing and our very expensive medications have never been so affordable. Additionally, the company pays the employee premium, so we are only responsible to pay the additional premium for spouse coverage. After so many years of crap coverage and serious debt, this has been an incredible blessing and a huge relief of major stress.

Four days ago, however, Nick’s employer informed the company that as of July 1st, this benefit coverage would be discontinued in lieu of an HSA plan. Now an HSA plan does provide some insurance coverage for basic, routine health care….annual physicals, office visits, etc. But there is very minimal coverage for specialist care and prescription drugs. For two people living with very expensive chronic diseases that require a lot of care and medication, an HSA plan is not a realistic option. But it is now the only option the company is offering. And we are only receiving a week’s notice.

P.A.N.I.C.

Just to put this situation into perspective, let’s look at the details of the new HSA plan that would apply specifically to us. Namely, prescription drugs. Under the plan, Tier 3 drugs (which is usually where our medications are classified) are covered at 50%. The current cost for a 30 day supply of my injectable MS modifying drug is $2000. So it would cost me $1000 a month to stay on treatment.

Now for those who don’t know, Nick has Hemophilia. He was diagnosed at birth and it is a life-long chronic condition that comes with a lot of pain and can be fairly disabling. The IV medication required to treat this disease is obscenely expensive and also extremely necessary. Nick literally cannot live without this medication. The average cost for 12 doses of this medication is (are you sitting down?) $33,000. We couldn’t afford 10% of that, let alone 50%. Add it all up and times that by a year’s worth and you come up with a number that is more than what both of us make in two years.

HSA plans are terrific for the average healthy individual. It covers all your basic, routine care and the plan costs are very low for both employer and employee. For people with chronic illnesses, however, it is clearly unrealistic.

We have been informed that Cobra is not an option, since the company is not eliminating coverage completely and is offering an alternative plan. So technically we are not losing coverage, though the fact that we cannot afford the new coverage is irrelevant.

Our only option, therefore, is for me to go back to work full-time and pick up benefits from my employer. Easier said than done. In order to be re-classified as a full-time employee (and therefore be eligible for benefits) I must first work full –time hours for two consecutive quarters. This means I would not be eligible for benefits until about February of 2011. The insurance change-over at Nick’s work happens in three days.

The phrase rhymes with “clucking bell”.

Given the outrageously short time frame to sort this all out, I was on the phone to the higher-ups at my company immediately, pleading my case and requesting any sort of exception that could be made under my circumstances. This issue has been escalated all the way up to the VP of our department, and he is supposed to make his decision by Monday. If he approves my request to reinstate my full-time status immediately, we’re good. I can sign up for benefit coverage that, while not as good as what we had before, is still fairly decent. If he denies my request, we have no other choice than to sign up for the HSA plan until I am eligible for benefits next year.

Should this be the unfortunate case, I will have no choice but to discontinue my MS treatment as we simply can’t afford it. Can I live without this treatment? Certainly, though potentially not very well. The additional stress on my body of full-time hours posses its own issues, but without my treatment to help protect me from relapses…..I shudder to think what the next 8 months would hold for me. As for Nick’s medication, the drug manufacturer offers an assistance program for people in our situation. We are hoping we can qualify for this program.

So as we are left to anxiously await our fate over the weekend, relying on the decision of a man whom we have never met, I am pondering how and why we have been landed in this situation once again. This is hardly the first time we’ve been in this boat. Quite the contrary, in fact. As chronic as our diseases are to our bodies, so is the battle for insurance coverage. And each time is more arduous, more traumatic and more emotionally draining than the last. It never ends. And just when things are good, when things are settled and we can finally enjoy a little bit of comfort and peace of mind with our health, the shit once again hits the fan. Living with the physical challenges Nick and I face on a daily basis is burden enough without having to always wonder when the rug will be pulled out from under us yet again.

I can’t help but be struck with a sense of hopelessness. I know that something will work out and Nick, at least, should be able to get his medication. But I am angry that this is happening again; that we must make this choice of who gets medicine and who doesn’t. I’m also fearful about going back to work full-time. Cutting back to part-time has been the best decision for my health. I have been doing so well, the best I have done since being diagnosed with this shitty disease three and a half years ago. But I fear that pushing my body beyond its limits will once again send me down the dark road that is MS relapse. And I’m scared.

This situation is extremely difficult, but it is what it is. It is beyond our control and we will just have to do the best with what we have to work with. I am striving to count my blessings every day and to recognize all the good and the positive in our lives. We really do have much to be grateful for and I am trying to keep my focus there.

We’ll get through this, one way or another.