Write a Letter!

I've been very busy lately writing letters - to the newspaper, to my congresspeople in the state, all sorts!
Here's the latest version of the letter I'd been sending. Next post I'll tell you what happened!
LETTER

In August I was diagnosed with an incurable cancer. At the time it was CUP - cancer of unknown primary, now it’s emerged as bile-duct cancer. This is a rare and usually fatal disease. It is similar to Patrick Swayze's Pancreatic Cancer.

I'm 57 years old and otherwise in good health. I've now been through three different chemotherapies with no good effect so far.

My personal insurance was UPH, a program supported by the State to help small businesses insure their employees. Unfortunately the program overspent their "expectations" and beginning last year they started raising rates and cutting services to such an extent that when they changed again 9/1/07 I found that the insurance was no longer affordable for me. Instead of the zero co-pay the policy I bought had for diagnostic tests in September it was going to 20% co-pay. Just an FYI. The CT scans necessary to monitor the effect of chemo cost in the neighborhood of $4000 each and you need them frequently if your treatments don't go as hoped and they often don't with many cancers especially rare ones where there is not as much research being done.

I was told to apply for SSDI (Social Security Disability) and Medicaid. I easily qualified and so the first 6 months of my care were covered. However in February I began to receive disability - terrific as I was 3 months behind on rent working very few hours due to chemo side effects and was in a world of hurt. BUT then I found out that I no longer qualified for Medicaid (run by the states each with their own rules although it is basically a federal program). So as of April 1st I no longer have ANY medical coverage and no way to pay for the very expensive chemotherapy I am on.

Now the state HAD forseen this sort of problem. Even when you qualify for SSDI you have to wait an additional 2 years before you can receive MediCARE. So for two years you are on your own. Why. I don't know, but I was told it was one way that services were cut during a previous "crunch".

Arizona created a program for people like me who once they get disability make slightly too much to qualify for Medicaid. (To qualify as a single person for Medicaid you have to earn $867/month or less, for example) Not a lot.

Section 4733 of the Balanced Budget Act of 1997 (BBA) allows States to provide Medicaid coverage to working individuals with disabilities who because of their earnings cannot qualify for Medicaid under other Statutory provisions. (They can't have much in the way of assets left either.)

Section 4733 allows States to provide Medicaid coverage to these individuals by creating a new optional "categorically needy" eligibility group.

Arizona had this program and funded it in 2007 but quickly it outspent their (optimistic?) projections. Now there is a "waiting list" that is HUGE of people waiting for it to get re-funded. As am I.

The program is only designed to temporarily help people like me who have catastrophic problems are on disability but have to wait for Medicare. They pay a premium on a sliding scale based on income. I'd be HAPPY to do that!

Instead it's not being funded and I am in the devastating position of not being able to do anything about my rare cancer. I can't even get a second opinion! (AHCCCS turned me down on March 31st even though any and every resource (including ACS) tells you that if you have an unusual cancer if you have no cure offered or several other criteria that I meet you SHOULD get a second opinion!) It's probably another cost-saving measure. In my case, since there are possible surgical solutions only done at Mayo Clinic, (the 2nd opinion I was trying to get). I am facing the "incurable" part pretty dramatically right now. Surgery, if possible, is the only real cure.

There IS a "spend down" option left which in my case means that if I spend all but a few dollars ($347) of my disability payments for three months completely on medical bills Medicaid will pay any remaining bills for 3 months. My question is how do I live on the $347? I'm still able to earn working very part time despite the disabling effects of cancer treatment, at the moment. But that $480/month only adds $480/month to my spend-down. I'm working because otherwise I'd starve and/or be homeless. Is this how we want to treat cancer victims?
What do I do?