Thursday, January 11, 2007

Lance Armstrong Is Wrong This Time

Lance Armstrong, arguably the best athlete alive today, and justly respected for the toughness and courage he showed in beating Cancer, did his reputation a little tarnishing today. Writing for CNN and speaking in front of the Capitol as if he were the Voice of America itself, Armstrong had himself a little whine-fest, demanding that the United States government spend more money on Cancer research.

OK, normally I would be really slow to take on someone as respected as Lance Armstrong. Especially where the territory is cancer. But if there’s one thing that I can say now that I could not just a couple months ago, it’s that I have at least as much right as Lance Armstrong to speak about Cancer and what the government should do, since I am presently fighting my own battle, years after he won his (and God willing he will not have to fight it again). I certainly have ideas about some things the government – at all levels – can and must do better – but I also know enough to suggest that Armstrong’s speech today was not altogether honest, either about what is being done or what can be expected in a reasonable effort to find a cure for Cancer.

Armstrong sounds like the stereotypical Liberal in his speech. Said Armstrong, ”I patiently waited to hear a candidate for office explain to constituents what he or she planned to do about one of the leading threats to the health and well-being of all Americans -- cancer. My patience was greeted with silence.” Well Lance, as important as it is to cancer patients to know what elected officials intend to do about Cancer, there has never been an indication that the voters in general demanded candidates address specific diseases or conditions. One could just as easily be outraged because no candidate for Congress mentioned Alzheimer’s, Heart Disease, or Diabetes. You were not answered, I dare suggest, because the question never came up during the campaigns.

Armstrong’s attack on the government continued: ”The political ads didn't tell voters that earlier in the year funding for cancer research was cut for the first time in 30 years. Nor did they explain that a lack of funding slows the pace of scientific discovery and the development of treatments. Our candidates did not mention the decrease in funding for programs that provide information and screening to people who need these services.”

Armstrong did not cite any sources to back up these claims, nor frankly am I personally interested in whether they are true or not. This might sound peculiar, but it’s because I see Mr. Armstrong’s suggestion that less money means less progress (also implying that more money spent will somehow create more progress, all on its own, which is a quintessentially Liberal proposition), is hopelessly poor logic. It’s as if Armstrong was arguing that only the most expensive bike wins the Tour de France, or that only the best-paid employee does the best work. Armstrong’s argument is emotional, at times compelling, but it hardly works on a rational level.

Armstrong claimed to speak on behalf of millions of Cancer survivors and patients, but he does not speak for me in this instance. The reason he does not, is because I find that confrontational tactics like his, while satisfying on one level, really do nothing to advance understanding or results, those very things Armstrong claims he wants most. As an example, I return to my own condition:

My cancer is a rare variant of abdominal cancer, PMP for short. Even after decades of research, not much is known about it, and while one new regimen has shown promise, technically there is no known cure for PMP and so by the book to have PMP is to have terminal cancer. Don’t worry, I am hardly giving up, but I want you to understand that I am not painting the walls of my scenario with fantastic illusions.

As it happens, I am presently going through a bureacratic maze, because the M.D. Anderson Cancer Center will not admit me until they have reviewed my case, which means they want to receive the medical records from every doctor I have seen and every test I have taken. The reader will note that M.D. Anderson has not offered to collect this information, but demands that I retrieve it and send it to them. In that course, I have discovered that my other doctors' offices have been very bad about dragging their feet. I was shocked to learn that unlike other states, Texas does not consider medical records to belong to the patient - the records belong to the medical provider, which in hard fact means that I cannot compel them to release my records - I have to ask them nicely and hope all my forms are filled out correctly. At least one doctor's office was actually offended that I was going to another provider to have my cancer treated, even though the cancer I have is a rare variant which the oncologist has never seen before. They "lost" my file for a week, then made me appear in person to request the files, which meant filling out a long form, which they then announced was - oops - the "wrong" form, and so I had to fill out another form instead. Despite multiple requests, by phone, in writing and in person, after two weeks neither my Primary Care Provider, my urosurgeon, nor my oncologist has sent the files to M.D. Anderson. Forgive me Mr. Armstrong, but I strongly doubt that giving more money to these sorts of people will improve the situation. If government wants to help cancer patients like me, they need to establish nationally the right of patients to receive and keep our own medical records. They need to establish nominal procedures that take burdens from patients and their families when they are already stressed and overwrought, and require that medical providers cooperate with patient requests and expedite processes where delay affects survival chances. Money is not the issue here, Mr. Armstrong.

I have great respect for Lance Armstrong's fight against Cancer, and his advocacy for better education and attention to Cancer in general. I would suggest that I see Armstrong's courageous and noble fight against Cancer in the same way that I see John McCain's courageous and noble service in Vietnam; extremely honorable and a great message, but it does not qualify him to speak with authority in all things or at all times. In other words, Armstrong is a heroic figurehead for all of us who fight Cancer, but he is not thereby qualified to make budget decisions, to judge the effort of Cancer research solely on one factor, nor is he qualified to speak as the sole voice for cancer patients.

Would I like more money to be available for Cancer research? Of course, but only if the researchers are accountable and specific about what they will do with additional money. There needs to be sanity about which form of Cancer needs funding the most and in what amounts, and what threats to human life and health must also be addressed. Simply giving doctors and laboratories more money, I must contradict Mr. Armstrong, will in no way advance the discovery of vaccines automatically, nor will a higher salary for doctors suddenly open the insights to prevention or curative regimens. At best, the money will provide tools which can help find advances, but without a demand for accountability it can just as easily be wasted. But more to the point, the problem with Mr. Armstrong's speech and demands, is that it focuses on the people who have always held control - the people who have money, who are in positions of power, and who will always be tempted to grandstand and play favorites. The focus should be on the needs of the patients, who all too often are objectified and their individual voices muffled because spokesmen like Armstrong are too busy playing politics to listen themselves.

2 comments:

smh10 said...

DJ:

If you continue to have difficulty securing your records you might try contacting the AMA. Also, speaking with your local State Representative can be helpful. (Both of these worked here when faced with the same difficulty.)

It is troubling enough to have a medical condition which needs attention but far more discouraging to deal with health care professionals who treat you as a number not a person.

Good luck and I hope you have a resolution on these records and files soon.

Big V said...

I think it was Jefferson who said (paraphrased) a government big enough to give all things is big enough to take away all things. Lincoln said it again when he said the government that governs best, governs least.