Saturday, April 18, 2009

Where do we go from here ? ¿ ?

It turns out that because I am an American Indian I may be entitled to help paying for drugs that I will need post-op. Drugs that I will need for the rest of my life. These anti-rejection drugs can be very expensive and cost many thousands of dollars a year. Our insurance won't pay for them.
When Lois and I got married we compared our work insurance benefits and discovered hers were definitely a lot better than mine. I have been on her plan ever since. When we discovered that I was going to need to have a transplant we were happy to find that her plan would actually cover the operation. We also learned that some of the drugs I would need for aftercare would also be covered, but not all of them. Some of them are going to end up costing us a lot.
The other day I got a phone call from the transplant center informing us about our insurance benefits and what they would cover. A drug called Prograf is the biggy. Prograf is designed to lower the body's immune system. While your immune system is there to fight infection, it will also fight against a new transplanted organ such as a kidney or liver because it thinks the body is being invaded. Prograf, along with other drugs, are used to help fight against organ transplant rejection. Apparently I need to find a way to pay for this immunosuppression drug before I can get a transplant. Or else ¿ ? ¿

The transplant center is doing its best and willing to do what it takes to help us out in exploring all our options. But now we have reached an impass. The idea to look into Indian benefits was actually the social worker's thought. A good one. Buuttt... I was adopted and I have no ties with my Indian tribe. I know that I am a Yaqui Indian because my parents said so. They adopted three of us -- two Yaquis and a Pima while they lived in Phoenix. But my case is no different than any other adoptee's. When the adoption is finalized, they reissue a birth certificate that shows the adoptive parents as the natural parents. There's nothing on it that says, adopted.
So I must first somehow prove that I was adopted and then find a way to have my adoption records opened so that I can prove it to the tribal council. And then I might be eligible for Indian funds.Years ago I did a little research on trying to find my natural parents. I wrote a letter to ALMA Society (Adoptee's Liberty Movement Association) and they responded by telling me there might be a loophole in finding my parents because I was Native American.

Adoptees who are of American Indian heritage can learn their original names and names of their birth parents by taking advantage of the Indian Child Welfare Act of 1977.

This law was made for a number of reasons, but the one that is of most importance to me is that my records can supposedly be opened due to genetic and medical reasons. It is a federal law. In my case I am not so much interested in finding my natural parents but rather looking for medical history and acknowledgement from the tribe so that I can apply for grant money so I can show that we can get the Prograf. Without that, there will be no transplant.
Anybody know any adoption law? We're stumped.


  1. I'm going to do some research and see what I can find out to try to help.

    I can only imagine how expensive that drug is. I don't imagine that the pharmaceutical company that makes Prograf has any programs that would assist? I'm going to spend any time I get to use the computer to see what I can find out, and talk to some people to see if they have any ideas that might be of help. (Of course, I will just be asking general questions to get pointed in the right direction.)

    I'll keep you posted with any ideas that I thnk may be helpful.

  2. There is some good news, although from the perspective of a liver transplant, that's all relative. I have a rather icky prescription plan myself, and the anti-rejection medication was looking restrictive for me as well. We asked our doctor and he said the manufacturer of the most expensive one was just about to loose their patent--which means that possibly within a year we'll begin to see a generic version of it on the market. That would make it a great deal cheaper--although that is relative as well. You may consider asking your doctor about that.

  3. Thanks for your visits to my blog recently. I hope you are able to work out the adoption issue and claim your Native benefits and heritage. Blessings, jen