Injustice makes my blood boil
Few things I have encountered in my life have demonstrated to me how screwed up the United States’ health care and political/economic systems are than my experiences with NET cancer.
First, there was the joy of discovering we have spent virtually nothing on NET cancer through the federal government in over 40 years. I have said here before that I consider 1968 to have been the year the government signed my wife’s death warrant in the name of cost-benefit analysis. I have also stated many times how glad I was that Jane and I opted to pay a bit more for our already exorbitantly priced health insurance so that her illness did not wipe us out financially. There is no other way I could undertake the work of fighting the disease now rather than fighting to keep a roof over my head.
You want an argument for national health?
Then I discovered the headaches of being an orphan disease drug companies have no desire to develop drugs for because there is no profit in it for them. The result is ideas and treatments sit on the shelf for years that might offer patients some small relief of their symptoms if not a real cure.
And now this
I have spent the last two days updating the Resources pages about some of the most recent discoveries about NET cancer and our fight against it. There are some good things to report on a number of fronts that I will write about over the next few days. However, in among those stories of progress I encountered two blogs that were new to me–and that made my blood boil.
NET cancer patients are screwed in so many ways that it is hard to count. They suffer from poking and prodding and endless incorrect diagnoses. By the time someone figures out what the problem is they are often beyond all but experimental hope. And of course, in most states, no matter how good your insurance, trials and other experimental treatments are not covered by insurance. Thank God we live in Massachusetts.
And that is just wrong.
The two bloggers in question, Ann and Brian, live in California. They both detail the years of less than benign neglect before their diagnoses with advanced NET cancer. Hers had even invaded the vertebrae of her spine before she got an accurate diagnosis.
The cost of treatment
Both qualified for the PRRT trials in Houston. Both, however, were faced with paying for the treatments out-of-pocket–at a cost of $60,000-$75,000. Ann describes in vivid terms what those treatments in Texas were like. She later discovered she could get the treatments in Europe for less money–even including travel and lodging–than she could here. Needless to say, she took her second treatment in Europe–and will get the rest of them there as well. What she also describes is a European treatment with far milder side-effects than she had from the treatments here.
NET cancer patients are screwed…
Both are thankful for the treatments they are getting. Both are thankful to the many who have made donations for their treatment. Both are thankful for the opportunity to continue living on this side of the grass.
But both are facing a series of treatments that will likely leave them with no retirement savings and a huge wall of debt–and no certainty that they will not need those treatments again at some point in the future.
And that is just wrong.
Obamacare is not enough
NET cancer is nasty enough without worrying about how you will pay for the treatments.
You want an argument for national health? NET cancer makes a strong case.
…treatments sit on the shelf for years…
All cancers do.
What we have now is better than what we had before–but it is not good enough–not by half–not when cancer patients have to put up bottles in local stores and host dinners to pay for their treatments.
