Read CAH and politics for a thorough explination of the choices and ramifications involved.

 

Here’s the text (there is some discussion too that would be good to read. Follow the link to the archives to read the discussion):

There are several issues surrounding CAH that lead to some level of political involvement (newborn screening, HMO regulations, etc.)  As I’ve researched some of these issues I’ve found differing approaches to accomplishing what needs to be done. Take newborn screening. Currently 20 states do not screen for CAH. Those that do may or may not have laws requiring it. In Oklahoma there is no law regarding newborn screening, it is done as a policy of the department of health, and CAH isn’t on their list of screened conditions. In Missouri a law was proposed, approved by both houses of the state legislature, signed by the governor, then stopped at the Secretary of State’s office and held there (for about a year now). It was apparently opposed heavily by several powerful HMO’s. Some have pushed for a Federal law regarding newborn screening which would make screening uniform across the nation. So far it’s still at the suggestion stage. As I see it there are four reasons a newborn would be screening for CAH, the Federal Government requires it, the State government requires it, the State Department of Health requires it and the parents voluntarily choose to have it done. The first isn’t law and the last is currently more or less useless since most parents are unaware that such an option exists. So as we work toward making sure newborn screening is done more we have these four options to consider, wage one large battle for Federal legislation, wage 20 (or more, for those states that screen, but are not required to by law) separate smaller battle to make it law in all states, wages 20 even smaller, but continuous battles to ensure the respective Departments of Health (or whatever they call themselves) require it and continue to do so or organize a nationwide campaign to educate parents of the option and desirability for screening for CAH. The first choice is bad. Trying to actually get such a law passed would open a large can of worms. By itself, such a law wouldn’t attract much attention (not enough PR to interest most politicians) and there would inevitably be nonsense amendments attached to it, possibly some that negate the very spirit and intent of the bill itself. Here’s an example. Let’s say Congressman X puts forth a bill that would require all daycare providers to not hire workers who have been convicted of felonies. Sounds good, makes a nice "we care for the children" campaign point. Congressman X submits the bill and it’s sent to a committee. The committee however adds two amendments. The first amendment puts $50 million dollars in pork spending in the home state of the chairman of the committee. The second amendment rephrases the bill to say that daycare center may not hire those they know have felony convictions, but are not required to obtain or even ask about such convictions. In essence the original bill is now gutted, and is a re-election ploy for the chairman of the committee. The original authors are outraged, but since the bill still carries the same title, they know if they vote against it their opponents in their next elections can use a vote against it to say they "don’t care about children" even though now the bill, in reality, has little to do with children. So they vote for it anyway, it passes, and those who actually wanted such a law are out of luck, since getting any actual law is virtually impossible now that a pretend one already exists. Getting uniform newborn screening via Federal legislation or even through the Federal Department of Health and Human Service is like letting a tiger into your house to kill a mouse. The problems you have afterward, makes your initial problem seem trivial. Getting legislation on the state level can carry the same problems, but not necessarily. I researching the legislation here in Oklahoma, the only bill I could find regarding newborn screening was vaguely worded, proposed by a politician notorious for pulling political tricks, and froze in conference committee. Had it been passed it’s very likely that getting CAH added to newborn screening could have been more difficult. Any bill proposed at the state level would have to be worded extremely carefully, and followed carefully as it made its way through the process and pressure applied if any amendments were proposed that would weaken the bill. A lot of work, which could easily backfire if the resulting law was phrased wrong. Now working with the various Departments of Health wouldn’t take as much effort. Many of these states screen as policy, and which conditions are determined by some official somewhere, typically on the advice of professionals or even a selected committee. I found that Genetics policy for the Oklahoma Department of Health is determined by the Commissioner of Health based in part by advice given to him by the Oklahoma Genetics Advisory Council, which is made up of 27 members who are clinical genetic and laboratory providers, primary care providers, related specialist, Indian health representatives, clergy, consumers, insurance and community representatives and 15 ex-officio members from Oklahoma State Department of Health programs and Department of Human Services. They meet three times a year, and there next meeting is May 18th (I plan on being there). Getting CAH added to the state’s list of required conditions to screen may be as simple as showing up with enough info to convince them it’s a good idea. (Note, I said may be) But then again CAH could be dropped just as easily. But there would be little worry about problems of bad laws and bad politicians. It would be a matter of consistency and diligence. I do think that the fourth option could be the ideal one if implemented correctly. If a comprehensive program of was developed linking genetics labs with hospitals, making sure each and every expectant parent knew of the availability and importance of genetics testing, and such a program could make sure the costs of such testing were kept at a minimum. We could accomplish universal newborn screening without expanding the role of government. Since the work required to pass and monitor legislation is generally so great, such a program may actually be the easier to implement. If it could be organized in such a way as to minimize long term medical costs, many HMO’s might support or even pay for the testing. If the media were handled right, many news outlets would jump to report on it, and it’s popularity would make it easier to implement. The choice seems to echo the old saying by Thomas Jefferson, "Those who prefer security over freedom deserve neither." We can accomplish the exact same good with hard work and diligence, without involving added laws, and without added headaches that the government inevitably brings. It just takes a little more work. We need to put our priorities behind what’s best, rather than what’s easiest.