We can hope.

Perhaps we should emphasize that there is a need for equality of opportunity to live and not die because of an individual's poor genetics. If we intended to reward good genes we would not allow the rich to buy health care that overcomes genetic weaknesses like poor vision, diabetes, weak hearts, etc., or the interventions that save infants with birth defects.

We have chosen to not accept the outcomes of genetic weaknesses, and health care should be like police protection--available to all, at least in name. Even a poorly-realized ideal can be approached more closely, over time.

Some interesting economics can come up in situations like this. For example, I have bad genetics and good genetics. Both my father and I developed hypertension and dyslipidemia (think bad cholesterol) in our early thirties.

In my case, both were immediately and aggressively treated. At his time, there were both limited treatments and a much more poor understanding of the disease mechanisms. We were out of contact, but I learned that he had a heart attack in his mid-thirties, and was quite restricted by congestive heart failure afterwards. As he mused, ruefully, he was finally getting established in Hollywood, but his heart function precluded a sex life.

I had a first episode of chest pain at 39, and immediately activated an emergency response system able to cope. ICU observation followed until in was clear that unstable angina, not a myocardial infarction (heart attack) was involved. Within a month, it was clear that drug therapy alone wasn't enough, so the blocked vessels were cleared with an angioplasty. The drugs were revised and extended.

Without going through all the details, there were a series of times where my disease got worse, but there was an effective response that bought 3-5 years of health. Eventually, I had a quadruple bypass, but two vessels closed in about six months.

Now, here's an interesting contrast between HMO and best available care. My HMO claimed the return of chest pain was muscle pain and wouldn't work it up. Well, that wasn't an acceptable response, and, understanding the system, was able to get into long-term studies at NIH Clinical Center. They did five days of research-level inpatient studies, and came up with a cocktail of drugs that eliminated symptoms.

Where the genetics start getting interesting is that once I was being monitored by NIH, my diminished heart function started to improve. Apparently, while I have bad genetics as far as the formation of heart disease, I have good genetics in another area. If my heart is supported well, I am one of the people with a genetically-determined ability to have heart capillaries enlarge and take up the flow of blocked arteries. Technically called "collaterization", it's effectively a do-it-yourself bypass.

So, compared to my father, dead at 43 and with major impairments in his mid-thirties, I'm about to turn 58. I'm due back at NIH in a couple of weeks, but the last testing was showing that my heart function had improved to just below athletic conditioning -- and I need to work out more.

As I think about it, my case has at least some minimal features of what we might call longevity extension.

--
Howard

*equal opportunity offense to both extremes*

You raise an interesting point, which relates, at least in part, I've actually been discussing with some professional bioethicists, including NIH staff. Their concern was what they call the "burden" on patients participating in clinical trials. Their initial idea was the way that most patients that had found their way into a trial tended to be overwhelmed with paperwork. One not-obvious problem is what may appear to be one clinical trial legally/professionally has several closely related ones, each of which has an informed consent to sign, but with a lot of overlap.

For example, a clinical trial of a new drug for something might actually involve consent to the potential risks of the drug, but also to one or more either standard or experimental imaging techniques used to assess progress. A good editor could put this in one readable document, but the documents were either drafted or approved by those great communicators, lawyers.

There's another problem in that many patients may not fully understand the disclosures made. One well-known area is that while things like "rare" and "uncommon" have precise medical definitions, many patients don't have a quantitative sense of what they mean. This can lead to unrealistic expectations, a problem beyond clinical trials alone. TV has confused much of the public, for example, of the roles and probabilities, of CPR, advanced cardiac life support (ACLS--what happens when the paramedics, nurses, or doctors get there) and Do Not Attempt Resuscitation (DNAR, now preferred to DNR).

I am all in favor of appropriate resuscitation. One of the reasons DNR has been replaced by DNAR is the reality, when you take the population as a whole, most patients who get ACLS do not respond at all, die shortly afterwards, or may suffer such brain damage as to have lost the sense of the person. Done correctly on a patient likely to respond, you may see a patient skipping out the hospital steps.

Under the guidelines of the Helsinki Declaration on Human Rights, a patient getting a treatment, much less participating in research, is entitled to an explanation in terms the patient can reasonably be expected to understand. That is usually interpreted as providing something in simple language, but I raised the question of the patient who is perfectly capable of understanding the actual medical details, and wants information not in the consent form. Even at NIH, this can cause confusion -- in one funny and very low-risk situation, I dug up the information myself and gave the team (not including the Principal Investigator) a 10-minute explanation of how the two imaging contrast drugs worked.

This is not so much about me as my wondering about how the ordinary patient can have advocates in dealing with healthcare. I do such advocacy, as do others, but it tends to be friends and family.

Tom, I'm still trying to figure out my own emotions in solving a problem for extended family. One member, still a citizen of Sierra Leone married to an American, had returned to Africa, and, pretty certainly from a contaminated syringe, seroconverted to HIV positivity.

For someone with HIV, TB, and certain other conditions, there are additional requirements to get the visa. One of them is having treatment lined up in the US.

The immediate family, which contains several certified nursing assistants but with no more advanced medical background, was incredibly frustrated in finding an appropriate program. It happened that I didn't even have to research, but had a likely candidate in mind, who probably could refer if they couldn't do it. Inside a couple of hours, I had the wonderful people at the Whitman-Walker Clinic organization in metro DC working the case, making a resource decision if they could handle the case, and providing experienced lawyers to handle the immigration matters.

The visa should be ready in the next couple of days. I'm truly happy, bothered by the recognition that most people might not have managed to navigate the system, and also recognizing the needs of the system. In like manner, it's hard to do cost control when one has to be fairly advanced in medicine and have the codebook in hand to analyze a hospital bill. I have never gone line-by-line through a hospital bill and not found incorrect charges.
--
Howard

*equal opportunity offense to both extremes*

Bill SB840 is a political stunt designed to embarrass Arnold and the GOP. Its such a stinker that a liberal like Phil Angelides won't even support it.

Its the way politics is played in CA during election time. Each side throws up bogus legislation that doesn't stand a snow-ball chances in hell of passing just so the pols can show the folks back home they are doing work. Then they go back to shaking down big business and the unions for money.

The real legislation is done by the state initiative system where the people bypass that cesspit in Sacramento.

What's the measure of performance? Cost of overhead? Cost to patient? Or profit to the provider?

The unsubsidized market will perform well for the shareholders and leave many uncovered.

You are right to point to deep questions about what should be provided, though. An example might be police protection. Available to all but with reasonable limits.