January 04, 2006
Risk & Reward
How each individual reacts to medications can be puzzling. Any one anti-depressant may only work well for half of those who take it. Fortunately, there are many choices for anti-depressants so doctors can find a medication that does work for a patient. That wasn't the case a few decades ago.
Ralph Nader's group, Public Citizen, has been campaigning the FDA for years to ban various medications because they feel the risks are too high. They, and other groups , have focused their attention on drugs that are used to treat mental disorders in children and teenagers. Many feel that such drugs should not be prescribed (or at least prescribed much less).
Users of Permoline (Cylert) are now victims to this campaigning as the FDA has pulled Permoline from the market. Permaline was originally released as a treatment for ADHD, however it has found to be useful in the treatment of fatigue in M.S. and Narcolepsy.
One victim is Teresa Nielsen Hayden of the Making Light blog. Permoline has been the only drug that has worked against her Narcolepsy. Now she nothing to help her with her disease.
So what was the FDA's reason for pulling Permoline from the market? Some people taking Permoline developed liver problems (and many people didn't). Originally, to address this, the FDA issued a "black box" warning asking to doctors to regularly check the livers of patients taking this medication and to stop use of the medication if a problem developed.
Teresa Nielsen Hayden's liver is fine, she had been regularly tested. However, her narcolepsy isn't. Now she has no options. Since narcolepsy is a "rare" disease, similar in numbers to Huntington's Disease, they don't have as much influence with the FDA as Public Citizen.
It's a crying shame.
Posted by Dave at 07:01 AM | Comments (0) | TrackBack
January 02, 2006
Sicko
A year ago I commented on what I thouight be upcoming difficulties for the pharmaceutical industry. One of them is due to hit this fall.
Variety reports that Michael Moore's new movie "Sicko" is due to hit theaters this fall. I stand by what I wrote a year ago:
I didn't see his last film, "Fahrenheit 9/11" though I know it has its fans & critics, but let me tell you about one that hit close to home - "Bowling for Columbine". I live near Columbine High School and I saw his distortions. I would even call them lies. Some examples that I can confirm from local coverage: The killers didn't go bowling, the Lockheed plant makes rockets for satellites not WMD's, he lied about the plaque & the plane, and many who appeared in the film state they were deceived by him.Having seen his work first hand, my belief is his pharmaceutical movie will be filled in a similar, misleading way. That can't be good for the industry.
And how has the pharmaceutical industry done over the past year? Not so good:
Not that long ago, investors thought of drug stocks as protection against the economy's troughs and as opportunities for growth in rising markets. But Big Pharma's struggles of recent years have sent many once-supportive shareholders scrambling for something stronger.The Amex Pharmaceutical Index, which tracks mostly big companies, trails both the S&P 500 and the Amex Biotechnology Index at intervals of six months, one year, two years and five years.
It takes money to make cures for diseases like Huntington's Disease. It hurts us all when investors no longer wish to invest in the pharmaceutical industry.
However, there is one bright spot and it is biotechnology. Investors are still flooding in as companies start to make some real progress. Overall, biotechnology stocks were up 25% for 2005. Sirna Therapeutics, which has a very promising Huntington's Disease program, saw its stocks end the year about where it started at a little over $3 a share.
Posted by Dave at 08:56 AM | Comments (0) | TrackBack
January 01, 2006
Australia Moving On Genetic Descrimination
Some good news from The Age:
The Government has agreed to amend the Disability Discrimination Act to ban employers from requiring employees to provide them with results of genetic tests, and to clarify the definition of disability to include a genetic predisposition to a disability, making it illegal for employers to discriminate against employees on the basis of their genetics.The Government has also agreed to make it an offence to test someone's genetic information without their consent.
Earlier this year, the Government announced it would partially implement the key recommendation of the commission, to establish a Human Genetics Commission to advise the public and government on present and emerging issues in genetic technology, among other roles.
Posted by Dave at 09:02 PM | Comments (0) | TrackBack
June 19, 2005
WHO Rankings
In researching the Canadian Supreme Court ruling the last couple of days I came across references to the World Health Organization's ranking of nations when it came to health care. Canada came in 30th and the United States came in 37th.
The U.S health care system may not be perfect (I don't know of one that is), the low score surprised me. So I did some digging...
The ranking was done in 2000, not too long ago. What I found was the ranking criteria was heavily ranked by who wrote the final check - Public or private health care spending. Medicare = good. Aetna = bad.
The report also ranked high their view of efficiency in spending. A criteria which will always work against the country that spends the most on health care (which is America). In this category Oman had the highest score even though it has a much lower quality of care(which includes an infant mortality rate twice that of the U.S.).
Another criteria was whether the cost of each individual's health care was based on 'risk' or on 'ability to pay'. This tends to skew against the more capitalist societies. Columbia came in first.
Another factor in the ranking was life spans. This isn't as useful of a measure as you would think. People in different countries make different lifestyle choices. Exercise & making healthy eating chioces (Japan/Utah) will tend to extend life spans regardless of the health system. However, due to differences in the health care systems a man in the U.S. is 24% less likely to die from prostate cancer than a man in Canada. Yet WHO ranks Canada seven spots higher in the world rankings?
So how heavily were those items weighted into the final scores? In these catagories the U.S. achieved the highest scores (best in the world):
Responsiveness to patients' needs for choice of provider
Dignity
Autonomy
Timely care
Confidentiality
So despite scoring 1st in these five (arguably important) categories, the U.S. ended up with a ranking of 37. So if you needed critical medical care which would you choose - America, Columbia, Oman?
Posted by Dave at 10:58 AM | Comments (0) | TrackBack
June 18, 2005
Oh Canada
Growing up just a few miles from the Canadian border I've always had an appreciation for the beauty of the country. If you ever have a chance to travel through British Columbia & Alberta, do it. Unfortunately, the country now has poor health system and there are those in this country (U.S) who wish to emulate it.
Recently the Canadian Supreme Court, by a one vote margin, acknowledged that fact. When Canadian politicians established the country's single-payer health system they were concerned that if private insurance was allowed, only the sick would participate in the government health plan. So they banned private insurance and forced the public to participate only (with some rare exceptions)in the public health care system. The arguments were the same as what we see in the U.S., by spreading the cost across all citizens and by providing equal access to health care the total cost would be better managed and the care would be better. Didn't happen.
As is par for the course in these matters, total costs started to rise. Patients started visiting their doctors for ailments that didn't warrant a visit in the past. The government didn't have an endless supply of money so big-ticket purchases such as MRI machines were postponed in order to pay for the increased clinic costs. Waiting lists started to develop for the use of the expensive diagnostic equipment. Lower medical salaries, the bureaucracy and the workload took their toll as fewer people entered the health care field and more moved out of the country. Waiting lists started to develop to see a doctor. There was equal access to health care, but it is equally poor and becoming poorer.
Last year, more than 800,000 Canadians, 2.5 percent of the population, were waiting for health procedures. The average wait to see a specialist, according to the Vancouver-based Fraser Institute, is nearly 10 weeks. The institute pegs the estimated cost to these patients at $2.2 billion, or roughly $2,700 a person.Canada ranks 20th of 25 industrialized countries in the number of MRI machines. It ranks 16th of 25 for CT scans, and 8th of 22 for access to radiation therapy machines. As for the relatively new Positron Emission Tomography (PET) Scans, at least one province flat-out refuses to invest in them.
Although touted by U.S. admirers as cost effective, the Canadian system is not inexpensive, it's merely cheap. Financed through heavy taxes, the average Canadian spends $7,350 a year to support the system. Yet for all this spending, Canadians are increasingly discovering they can't even get an appointment with a family physician. "It's like winning the lottery to get in and see the doctor," grouses Whitby, Ontario, Mayor Marcel Brunelle. Only 63 family doctors serve Whitby's 110,000 residents. According to a recent poll, 4.2 million Canadians are without a primary care physician.
Which brings us back to the Canadian Supreme Court.
The Supreme Court found that waiting lists have become so long that they violate patients' right to "life and personal security, inviolability and freedom" under the Quebec charter of human rights and freedoms, which covers about one-quarter of Canada's population."The evidence in this case shows that delays in the public health care system are widespread, and that, in some serious cases, patients die as a result of waiting lists for public health care," the Supreme Court ruled. "In sum, the prohibition on obtaining private health insurance is not constitutional where the public system fails to deliver reasonable services."
Canada will now have to alter their health care system to adjust for this ruling. Done wisely, overall health care will improve. England modified their system to allow more private care and the quality of health care significantly improved.
So what does this have to do with those living outside of Canada with Huntington's Disease? There is no incentive in these single-payer health care systems to spend their limited treatment money on 'incurable' diseases such as HD. Communities like ours are hit hardest by these systems.
We need better solutions to health care, but a Canadian-style system is no solution.
Posted by Dave at 06:03 AM | Comments (0) | TrackBack
June 17, 2005
More On Canada's Health Care System
This isn't the first time I've posted on the subject of the Canadian health care system and it likely isn't the last either. As flawed as the US health care system is...it wouldn't be improved by following the Canadian model. Steve Chapman in the Chicago Tribune:
...Any debate on health care eventually arrives at the point at which one participant says, "We should have what Canadians have. Free care, universal access and low cost--who could ask for more?" ...The dirty secret of the system is that universal access is no guarantee of treatment. Sick Canadians spend months and even years on waiting lists for surgery and other procedures. In 1993, the average wait to see a specialist after getting a doctor's referral was nine weeks. Since then, according to the Fraser Institute of Vancouver, it has increased to 18 weeks.
The typical patient needing orthopedic surgery has time to get pregnant and deliver a baby before being called. The Supreme Court cited the testimony of one orthopedic surgeon that 95 percent of patients in Canada waited over a year for knee replacements--with many of them in limbo for two years.
In some cases, the delay lasts longer than the person enduring it. Or as the Supreme Court put it: "Patients die as a result of waiting lists for public health care." ...
After adjusting for the age of the population, the Fraser Institute compared 27 countries in the Organization for Economic Cooperation and Development that guarantee universal access to health care. By some mysterious alchemy, Canada has proportionately fewer physicians than most of these nations but spends more on health care than any except Iceland. ...
Admirers of our good neighbor to the north say the United States pours money into all sorts of fancy equipment but doesn't get better results by such measures as life expectancy. But life expectancy is affected by multiple factors, including education, crime rates and diet--with health care playing only a modest role. In those areas where modern medicine can make a big difference, the United States does very well.
Take breast cancer. In Britain, which is famous for its socialized system, close to half of all victims die of the disease, according to a recent Cato Institute study by John Goodman, head of the National Center for Policy Analysis. In Germany and France, almost one-third do. In Canada, the figure is 28 percent--and here, it's 25 percent. Our mortality rate for prostate cancer is 67 percent lower than Britain's and 24 percent lower than Canada's.
Posted by Dave at 01:19 PM | Comments (0) | TrackBack
March 31, 2005
Terri Schiavo - R.I.P.
Have you made arrangements to get a living will?
Whatever your decisions are regarding end-of-life care, the Terri Schiavo fiasco provides strong motivation for getting a living will.
I've been following the case these last couple of weeks and have been researching the various issues, including legal and medical. I can tell you that much of what you heard was wrong. We heard medical 'experts' giving opinions without all the facts, legal experts giving opinions without reading all the transcripts, political experts that didn't read bill, etc.
Add in all that is unknown and you end up with this mess. If Terri Schiavo had a living will, we never would have heard of her (she was one of an estimated 10,000 people in this country who are in some sort of vegetative state).
See a lawyer, get your living will.
Posted by Dave at 08:41 PM | Comments (0) | TrackBack
March 16, 2005
Cuba Not A Health Care Paradise
Cuba has been touting its supposedly superior health care system in a long standing propaganda effort. A few years ago they exported a number of 'doctors' to Venezuela as part of this effort. As you may know, Lake Maracaibo in Venequela has a huge concentration of families with Huntington's Disease.
So how good is Cuba's health care? Check this link out for yourself and you can see conditions at one of their 'top' hospitals. Yes, those are cockroaches.
There is also serious concern about the quality of their doctors, but I'll post on that some other time.
UPDATE: More pictures from the same hospital.
Posted by Dave at 05:43 AM | Comments (0) | TrackBack
March 15, 2005
Good News For Britains
Ministers have struck a deal to extend a moratorium on the use of genetic test results to deny people insurance. ...Dr Reid said: "Choosing to have a predictive genetic test can be life saving, and nobody should be put off having such a test because of fears it will be used against them by insurers.
There's one exception:
The new framework will mean that at present the only people who will have to disclose their test results are those who have undergone a test for Huntington's disease, and who are seeking life insurance cover for more than £500,000.
Yes, they single out Huntington's but only for live insurance exceeding a pretty large sum. That seems fair and reasonable to me.
Posted by Dave at 08:03 AM | Comments (0) | TrackBack
February 28, 2005
"Die in Britain, survive in U.S."
This is a great article which demonstrates the dangers of a "single-payer" health system like what some are advocating for the United States. The hype sounds great, but here is the reality:
Among women with breast cancer, for example, there's a 46 percent chance of dying from it in Britain, versus a 25 percent chance in the United States. "Britain has one of worst survival rates in the advanced world," writes Bartholomew, "and America has the best."If you're a man diagnosed with prostate cancer, you have a 57 percent chance of it killing you in Britain. In the United States, the chance of dying drops to 19 percent. Again, reports Bartholomew, "Britain is at the bottom of the class and America is at the top."
...three-quarters of Americans who've had a heart attack are given beta-blocker drugs, compared to fewer than a third in Britain. Similarly, American patients are more likely than British patients to have a heart condition diagnosed with an angiogram, more likely to have an artery widened with angioplasty, and more likely to get back on their feet by way of a bypass.
...Britain has only half as many CT scanners per million people as the United States, and half as many MRI scanners. With lithotripsy units for treating kidney stones, the United States has more than seven times the availability per million of population than Britain.
..."In Britain, 36 percent of patients have to wait more than four months for non-emergency surgery. In the U.S., 5 percent do. In Britain, 40 percent of cancer patients do not see a cancer specialist."
...As a footnote on Canada, the average wait for a simple MRI is three months. In Manitoba, the median wait for neurosurgery is 15.2 months. For chemotherapy in Saskatchewan, patients can expect to be in line for 10 weeks. At last report, 10,000 breast cancer patients who waited an average of two months for post-operation radiation treatments have filed a class action lawsuit against Quebec's hospitals.
Posted by Dave at 06:31 AM | Comments (0) | TrackBack
November 14, 2004
California's Prop 71 which successfully passed was supposedly setup to fund 'embryonic' stem cell research to the tune of $3 billion over the next 10 years. The proposition even used Huntington's Disease, among other diseases, as benefiting from research.
What has been missed in the resulting debate is that the proposition allows money to be spent on 'adult' stem cells as well as 'embryonic' stem cells. This is important as adult stem cells have a chance to help HD patients, something that is in real question with the embryonic stem cells.
Let's hope political correctness doesn't keep money from being spent on wonderful research results such as this report on successes in adult stem cell research:
In other recent work, scientists at Johns Hopkins Medical Institutes reported last month that they isolated heart stem cells from adult humans and other animals and were able to grow them in batches in a lab dish. The goal is to use them to replenish the damaged heart.
And Dr. Steven Goldman and his colleagues at University of Rochester Medical Center have made a discovery that he said could lead to a clinical trial in Huntington's patients within two years. There are no available treatments.
Like all stem cell scientists looking to treat brain disease, Goldman has aimed at reshaping the adult brain's store of stem cells. Less than a decade ago, scientists discovered that the adult brain has immature stem cells in two areas -- the ventricular zone and the olfactory system.
Goldman says these stem cells normally become support cells, or glia, that help neurons carry out their job. Scientists have characterized glia as the workhorses of the brain, and neurons as the generals. But his lab is taking the glia cells from the olfactory bulb of mice and turning them into neurons capable of restoring the damaged brain.
Researchers used a gene to pump brain-derived growth hormone -- considered important for stem cell growth -- into one of the stem cell zones. They found that when the stem cells of this region were bathed in a growth hormone called brain-derived neurotrophic factor, some of the glial cells developed into the kind of neurons that are lost in Parkinson's and Huntington's.
They then used another gene to block a protein that tells stem cells to mature into glia, and showed they could shut down production of glial cells and ramp up production of neurons in numbers that Goldman said could have clinical impact. The findings were presented last month at the Society for Neuroscience meeting in San Diego.
Mice in the experiment had a genetic mutation that causes Huntington's disease. Normally they would become very sick at 10 weeks, and those in the lab didn't get sick until they were 4 months old and lived almost twice as long as expected.
"The haze is really coming off the field," Goldman said. "We are beginning to understand where stem cells would work, and what the clinical opportunities will be."
Here is an important passage from California's Prop 17:
- Maximize the use of research funds by giving priority to stem cell research that has the greatest potential for therapies and cures...
In my book that includes the above study on adult stem cells for Huntington's disease. I hope the California readers of this blog will make sure that California does help fund further research in this area. They'll be needing the money when it comes time for clinical trials in a couple of years.
Posted by Dave at 06:33 PM | Comments (0) | TrackBack
November 11, 2004
DWMI - Driving While Medically Impaired
Thanks to Gerri on the Hunt-Dis email list for pointing out this article.
The NTSB is right. More should be done to help keep the medically impaired off the road. I know of too many stories where it took multiple accidents before a person with HD lost their driving privileges. I'm all for keeping people as independent as long as possible. However, I draw the line when others are put in danger - such as when a is child crossing a street.
The National Transportation Safety Board recommended that states adopt laws to guarantee legal immunity for doctors, family members and others who report dangerous drivers to state motor vehicle officials. Twenty states and the District of Columbia have no such laws.
Six states - Nevada, California, Delaware, New Jersey, Oregon and Pennsylvania - require doctors to report drivers with high-risk conditions.
Board members said police need to be trained to spot drivers with medical problems and doctors should be taught to talk to patients about whether they should be driving. The board also said federal agencies need to coordinate transportation possibilities for people who can no longer drive.
Posted by Dave at 05:33 AM | Comments (2) | TrackBack
October 12, 2004
Argument Against Nationalized Research
Derek Lowe writes an interesting an provocative article on why private research speeds the drug development process:
So we race each other in the clinic, all the way through, trying to figure out what everyone else is up to, and then we fight it out in the market. And it's a mess! It's inefficient and it's wasteful! But the hellacious part is, it's the best way that anyone's found to do it. We chase the reward of a successful drug, and we fear failure - losing out to another company, or worse, losing out to hordes of swarming lawyers. What else would make us jump as high, what else would make us run as fast?
As they say..."Read the whole thing."
Posted by Dave at 11:45 PM | Comments (0) | TrackBack
October 09, 2004
Reducing/Increasing Research.
"...would you be willing to trade a 10% reduction in price for a 20% reduction in the growth rate of new drugs?"
Research is, ultimately, driven by money. It's expensive. We've seen what Amarin has gone through to survive and bring a promising Huntington's Disease drug to the market.
This article on the "Marginal Revolution" blog has an excellent discussion about the effects price controls have on reducing medical research. This topic is of vital importance to our community because, due to the relative rarity of Huntington's Disease, our research is more vulnerable to drops in available research money.
Acemoglu and Linn's paper is formally about a different issue; the effect of market size on innovation. What they find is that a 1 percent increase in the potential market size for a drug leads to an approximately 4 percent increase in the growth rate of new drugs in that category. In other words, if you are sick it is better to be sick with a common disease because the larger the potential market the more pharmaceutical firms will be willing to invest in research and development. Misery loves company.
...
We can expect, therefore, that a 1% reduction in price will reduce the growth rate of new drug entries by 4% and a 10% reduction in price will reduce new drug entries by 40%. That is a huge effect. I suspect that the authors have overestimated the effect but even if it were one-half the size would you be willing to trade a 10% reduction in price for a 20% reduction in the growth rate of new drugs? No one who understands what these numbers mean would think that is a good deal.
As i mentioned before, reductions in research would hit HD research harder than it would for other diseases with larger pools of potential buyers.
Posted by Dave at 12:52 PM | Comments (0) | TrackBack
August 19, 2004
How To Kill Another Generation
"(D)o we buy the drug companies' arguments"?
That's part of a comment posted by John in response what I wrote on drug reimportation. His thoughtful & considerate post deserves a response. Here it is:
How about the arguments of economists, investors, or researchers? They'll tell tell you the same thing. If an argument is valid then "yes" I would 'buy' the argument. To do otherwise would be foolish.
The question he posed "...do we buy the drug companies' arguments about price controls limiting research, or do we worry about being able to afford the new medications if they ever discover them?" is based on a faulty premise.
Simply put, if research is limited due to price controls then the new medications are not available at ANY PRICE.
The next sentence is a beaut! ... "A balance is necessary, and the reality in politics is that American voters are only going to stand for footing the bill for the rest of the world's research for so long."
How on God's green earth would artificially forcing lower prices create "balance"? And to whom? What is the price in human life are we will have to pay to achieve this "balance"?
When governments artificially force a lower price of a good, the supply drops. If an investment provides a lower return without lowering the risk, the money will flow elsewhere. This means people in the Huntington's Disease community will continue to see our loved ones die as research is postponed due to lack of funding. That's Econ 101.
The next argument made (very politely) is especially absurd.(Sorry. I'm sure he's a very nice & caring person, but it is an absurd argument.) The US is doing the lions share of the medical research in the world because, ironically, we DON'T put the artifical price limits on the fruits of their labors. If you don't believe me, ask the German (and other) researchers who now work in the United States.
Based on the links provided in the writer's comments, he believes the best response is to also have the rest of America pay for the drugs in Illinois and New Hampshire? This is bringing "balance" to us paying for the bulk of the worlds medical research? It's not.
I have a question for those with this argument... wouldn't the whole WORLD prosper if activists instead pushed other countries to lift their restrictions on their own pharmaceutial & genetic research companies? If they asked their countries to increase spending on medical research?
If this was done then all the countries would bear their fair share of the research needs of the world. The results? Research would increase, lives would be saved, and the costs would be distributed more fairly. But that isn't what is happening, Instead we are being asked to kill our research industry, just as it has been killed in other countries that took this course.
Don't expect me to gladly watch the miniscule research funds we have dry up for our 'orphan' disease. I'm tired of seeing our loved ones die! A cure for Huntington's Disease is now within sight but selfishness ("I want my state to pay less") and economic ignorance could ripe that away from us and our community can then watch another generation die.
One more thing...there is an economic cost paid when price controls are instituted. Usually, this cost is higher to the country as a whole than what is saved (that's a whole 'nother book).
Here's some more food for thought...excerpts from a speech given at the Keck Graduate Institute of Applied Life Sciences on this very subject:
(...The result: The country that is now responsible for the vast majority of new drug launches each year will go the way of, say, Germany, which, with few exceptions, is no longer a serious player in developing new drugs.
Research by Carmelo Giaccotto and colleagues, published by the AEI-Brookings Joint Center for Regulatory Studies, estimated that, if price controls had been in effect in the United States between 1981 and 2002, there would be between 330 and 365 fewer new medicines on the market today.
Research by John Vernon concluded that price controls applied in the U.S. today would lead to a cutback in new medicines by two-thirds within 50 years.
The economic development argument is powerful. The Bain study shows that, while Germany saves $19 billion in drug costs through price controls, it loses $22 billion due to reduced R&D spending, bad health outcomes, loss of high value-added jobs (and the tax revenue associated with them), and so on. Free riding isn't free.
How to get drug prices even lower? Simple. Increase supply. If Europe ended price controls, more companies would enter the market, pushing down prices. If the FDA streamlined its standards, costs of bringing new drugs to market would fall, increasing supply. If property rights were protected, the cost of capital for investment in new drugs would fall, increasing supply. That is the answer.
Posted by Dave at 11:47 PM | Comments (0) | TrackBack
July 24, 2004
Stem Cell Research - The Real Story
There's going to be some good news for the HD community next week. One of the topics coming out of the Democratic convention will be medical research.
We certainly need more discussion on this. The bad news is that the discussion is going to be limited to stem cell research, specifically embryonic stem cell research. The speaker on this will be Ron Reagan, the son of the former president.
Ordinarily, I would consider this all good news but the game here is all political, not medical, and the facts are going to be discarded. That's not new really, since getting the facts on stem cell research has been a challenge. Both sides are guilty of playing fast and loose with them.
I've been studying this topic for the last few months and this is what I've found out...
Too many news articles and advocates do not use the word "embryonic" when discussion the politics of stem cells. There are two types of stem cells - 'adult' and 'embryonic'. Adult stem cells can be found in the blood, bone marrow, fat, organs, placenta, umbilical cord, etc. Embryonic stem cells come from human embryos. The source of these cells are reason for the heated debate.
What makes stem cells different from other cells is their ability to change into other forms of cells (called transdifferentiation). Researchers are trying to use stem cells to create other types of cells the body needs. This type of research is of special interest to those who have diseases that involve the loss of cells, Huntington's and Alzheimers are just two of many.
So, you might be asking, why not just use the adult cells and not worry about using embryonic stem cells? Well, as it turns out, they do not behave the same. And there lies the rub. Embryonic stem cells are unique and are uniquely fascinating to many researchers. They have more questions than answers and some believe that answering these questions will greatly help medicine.
However, this is where many advocates tend to 'stretch' the truth to make the case for their side. First, adult stem cells DO transdifferentiate and researchers are learning more and getting better at it all the time. Those who say that only embryonic stem cells are capable are either ill-informed or lying. On the other hand, those who say that there is nothing worthwhile in researching embryonic stem cells (ethical issues aside) are also wrong.
Other 'inaccuracies'...stem cell research is not banned or even limited (except for certain cloning activies). There isn't even any limitation on embryonic stem cell research. Yes, you heard me, researchers are FREE to do embryonic stem cell research. What you are hearing about is FEDERAL FUNDING of embryonic stem cell research. Even that isn't banned, its just limited to the stem cell lines that were in existence at the time of the decision (numbers vary on how many there are, but 73 is a common number used).
But...it is told there are only (12, 17, 19,21...the reported number varies) stem cells truly available and usable. This is true, what you won't hear is that it takes time to make a line available and the number available is steadily increasing.
But...it is told these lines aren't usable for treatments on humans. Actually, this is true, or mostly so. There are issues with many of the lines. That doesn't mean they aren't useful for research, it's just that many are useable on humans. What isn't said in all this is that they are a VERY LONG WAY from use in humans and one of the biggest reasons has to do with the unique nature of the embryonic stem cells...they are relatively unstable and controllable (at this point). Treatments with these cells have a high occurance of tumors. (There is also research in using these cells to treat tumors).
But...adult stem cells are not useful for treatment. This is not true, all successful stem cell treatments today involve adult stem cells. Bone marrow transplants are really just stem cell transplants as it is the adult stem cells that do the work. This, however, does not mean the embryonic don't have any potential for future treatments.
Heard...nobody is investing in embryonic stem cell research because there is no future in it. That isn't true, well...at least not exactly true. Private research companies, as a rule, are NOT investing in embryonic stem cell research. However, there is funding coming from many foundations including the Juvenile Diabetes Research Foundation, Stem Cell Research Foundation, Michael J. Fox Foundation, etc.
In fact, there is far more funding for embryonic stem cell research than there is for Huntington's Disease research. There is also a lot of money going into this research in other countries, not to mention the federal funding of approved cell lines in the US.
So what is the big deal then?...Well, NIH funding accounts for a huge percentage of all medical research. Full federal funding opens up a huge new source of cash. It also makes more researchers available (who are now involved in federally funded projects).
So what is the potential of stem cells in treatments, especially Huntington's Disease? There appears to be potential, for both adult and stem cells for use in many medical treaments. Parkinson's & paralysis are two such candidates for this type of treatment. It does appear that treatments involving adult stem cells will arrive sooner (for a variety of reasons).
As for their use in Huntington's Disesase? I'm more of skeptic on this one. At this stage, I consider it the equivalent of adding air to flat tire without patching the hole. The mutated huntingtin protein will continue to kill cells and the surgical insertion of stem cells (embryonic or adult) into the brain has its own problems and limitations. However, when a cure does come, there is a chance that this type of treament could be helpful in restoring brains that were damaged. Of course there is always the possiblity of delivering this type of treatment in a less-invasive manner.
There is an argument that could be made that a stem cell treatment for HD could create some type of cell that would be effective in helping protect the brain from the mutated huntingtin protein. This might be possible, however, I believe that there are other potential treatments with a greater likelihood for success and in a sooner timeframe.
Keep this in mind as you follow the convention next week. If we are lucky this will lead to a broader discussion on medical research. I'm somewhat doubtful. I suspect we'll see more 'heat' than 'light' on the subject.
Perhaps this will lead the Bush campaign to release more information on any medical research proposals they may have. So far they are presenting less information than Kerry on the subject, even though the current administration has done quite a bit of good so far(esp. the last 18 months). but time will tell.
Posted by Dave at 07:46 PM | Comments (1) | TrackBack
July 08, 2004
Senator Pleads For Bill
For a few moments on Thursday, the only sounds in the U.S. Senate chamber were the sobs of a grieving father.
Oregon Republican Gordon Smith took the floor to introduce a youth suicide prevention bill named after his own dead son. ...
But by the time he had finished, several colleagues had lined up to embrace him. ...
New Mexico Republican Pete Domenici, who has been very public about his daughter's struggle with schizophrenia, had gone home early, but threw on a suit and dashed back to the Senate to sympathize with Smith.
Domenici said he would make another push for the bill he's advocated for years that would require health insurers to treat serious mental illness the same way they treat physical illness...
We need mental health parity. There is no reason a person with HD should have reduced benefits because the disease hits above the neckline. Depression kills.
Oregon's got a good one in Rep. Gordon Smith (R). Read the whole article here.
Posted by Dave at 07:07 PM | Comments (0) | TrackBack
June 28, 2004
Legislative Alert
From HDSA:
Genetic Nondiscrimination Legislation
We urge all HDSA Advocates to contact the following three members of the House leadership. These three members of Congress have the power to schedule speedy action on genetic nondiscrimination legislation. It's crucially important that they hear from you.
The message for each Congressperson is the same: Congress must take up and pass S. 1053, the Genetic Information Nondiscrimination Act, as quickly as possible. We must not allow another year to go by without protecting Americans against genetic discrimination. This bill was passed unanimously by the Senate and has the support of the White House, the Administration, and hundreds of organizations including HDSA. A similar House bill, H.R. 1910, has 241 bipartisan cosponsors. Pass S. 1053 now!
We urge our HDSA Advocates, especially those living in the districts represented by each of these individuals, to act now to contact the representatives listed below. As your elected representative in the Congress, ask them to support the genetic nondiscrimination legislation S. 1053.
1. Speaker of the House Dennis Hastert
Represents North Central Illinois, West of Chicago
District Offices:
Batavia: 630-406-1114
Dixon: 815-288-0680
To send an email, please click on the link below or copy and paste link to address bar:
http://www.house.gov/hastert/write1.shtml
2. Energy and Commerce Committee Chairman Joe Barton
Represents the Fort Worth, TX suburbs, including Arlington
District Office:
Arlington and Ennis: 817-543-1000
To send an email, please click on the link below or copy and paste link to address bar:
http://joebarton.house.gov/contact.asp
3. Education and the Workforce Committee Chairman John Boehner
Represents the suburbs North of Cincinnati
District Offices:
West Chester: 513-779-5400
Troy: 937-339-1524
To send an email, please click on the link below or copy and paste link to address bar:
http://johnboehner.house.gov/contact.asp
Posted by Dave at 11:41 PM | Comments (0) | TrackBack
June 27, 2004
Canadian Poll
Canadians are going to the voting booth tomorrow and guess what their number one issue is (as least in the Alberta)?
52% of those polled showed health care as their number one issue. Why is that? According to this article in the Calgary Sun, Tory candidate Jim Prentice mentions that "medical horror stories arise frequently on the campaign trail".
It'll be interesting to see what the results of the elections will be.
Posted by Dave at 11:09 AM | Comments (0) | TrackBack
June 14, 2004
Domestic Terrorists Charged
It's about time.
Domestic terrorists have been threatening research facilities that are working for cures to incurable diseases such as Huntington's disease. The government is starting to take action against these organizations. An excerpt from a recent article:
Federal authorities in New Jersey and three other states charged that the defendants, six men and one woman, belonged to SHAC and had engaged in acts that included vandalism, sending threatening letters, making threatening phone calls, home invasions, and physical assaults. "Their business, quite frankly, is thuggery and intimidation", said US Attorney Christopher Christie at a press conference following the indictments.
The domestic terrorism perpetrated by groups like SHAC, the Animal Liberation Front (ALF), and Earth Liberation Front (ELF), has until now involved 190 investigations into their activities, but with the exception of one or two among them, has not resulted in the kind of arrests that made headlines.
SHAC was formed in 1999 in England to put the parent company of Huntingdon out of business and this company's business is the vital testing of new life saving pharmaceuticals. Its US laboratory in Somerset County, New Jersey, like its British counterpart, uses thousands of animals, mostly rats, for such testing. The five-count indictment asserts that the defendants crossed the line from civil demonstration to domestic terrorism, i.e., criminal acts.
Tracking down the members of ALF and ELF has taken on a new priority among federal law enforcement authorities. These and other domestic terrorists have committed more than 1,100 criminal acts in the United States since 1976, resulting in damages that are conservatively estimated at $110 million. In August 2003, they burned to the ground a 206-unit apartment complex that was under construction in San Diego, causing $50 million in damage. That same month, a bomb exploded at the biotech Chiron Corporation's Emeryville, California, business office. There were no casualties, but the bomb did a lot of property damage. In September, ALF terrorists destroyed much of the Louisiana State University School of Veterinary Medicine's office in Baton Rouge.
In April 1999, ALF terrorists vandalized a cancer research center at the University of Minnesota, destroying the work of university researchers seeking ways to treat brain tumors.
Posted by Dave at 04:17 PM | Comments (0) | TrackBack
June 01, 2004
Legislative Alert
This doesn't come soon enough and we need it. Here's the release from HDSA:
Senator Bingaman (D-NM) recently introduced legislation to amend Title II of the Social Security Act to phase out the 24-month waiting period for individuals who receive Social Security Disability (SSDI) benefits to qualify for Medicare coverage, as well as to eliminate any waiting period for those individuals with life-threatening conditions.
For the rare disease community, it is a fast-track provision that will allow those with life-threatening illnesses to get immediate coverage before the waiting period phases out. In Section 3 of the proposed legislation, "For purposes of identifying life-threatening conditions under paragraph (1), the Secretary shall compile a list of conditions that are fatal without medical treatment. In compiling such list, the Secretary shall consult with the Director of the National Institutes of Health (including the Office of Rare Diseases), the Director of the Centers for Disease Control and Prevention, the Director of the National Science Foundation, and the Institute of Medicine of the National Academy of Sciences."
We urge you to contact your Senators today asking that they contact Senator Bingaman's office to become an original cosponsor to this important legislation. The contact in Senator Bingaman's office is Bruce Lesley, (202) 224-5521.
Posted by Dave at 08:21 PM | Comments (0) | TrackBack
May 29, 2004
Oh Canada
Unlike in the United States, health care has been a major topic in Canada's political campaigns.
The Globe and Mail has a commentary piece with the wonderful title "Health Care Experts? Ask The Sick". It's definitely worth a read. Here's an excerpt:
"The Canadian health-care system is not great. It's not even very good. Mostly, it is mediocre, but the saving grace for many people, Liberals included, is that it is usually equally mediocre for almost everyone."
This was in response to:
"As Mr. Martin cried aloud the other day, incomprehensibly if passionately, "I love the United States, but I love far greater that we are different! I love that we are independent! I love that we are Canada -- and we're going to stay that way!" Yes, indeed: We are great; we are not Americans; we have the best health-care system in the world, and no one, least of all some big-headed Conservative boy with the initials S.H. is going to take that from us, hear?"
The writer then goes on to discuss how she has seen the quality of health care decline under Canada's system.
Posted by Dave at 11:59 AM | Comments (0) | TrackBack
May 07, 2004
Another Take On Reimportation
Mort Kondracke has a take on the drug reimportation issue. Key phrase:
"(reimportation is) tantamount to importing foreign price controls, which retard drug research and development of new treatments for disease."
As with the article from yesterday, I can't agree with everything it says. But...it does give one something to think about.
Posted by Dave at 07:51 PM | Comments (2) | TrackBack
April 26, 2004
WP Backs Genetic Discrimination Bill
The influential Washington Post has published a house editorial backing the passage of the Anti-discrimination bill that is currently stalled in a House subcommittee. Here is a key point they make (which has been made here also):
"But this promise is tempered by the risk that individuals' genetic heritage could be used against them. Employers could refuse to hire, or could fire, those predisposed to develop a disease. An insurer could refuse coverage, or charge higher premiums, on the basis of genetic tendency. And the specter of such discrimination could deter people from undergoing genetic testing, thus potentially undermining their own care and slowing the pace of scientific discovery."
Posted by Dave at 11:47 PM | Comments (0) | TrackBack
April 25, 2004
Medicare Chronic Care
There's a new health care blog "Healthsignals New York" (found via the Health Care Blog) on the federal government's new chronic care improvement program. You can get the details here.
Posted by Dave at 10:00 PM | Comments (0) | TrackBack
April 17, 2004
Antidepressants Dangerous?
Keep an eye out on the debate about antidepressants over the next year.
There are a number of legislators and medication luddites who fail to understand "cause and effect". Their argument is this...
'Johnny was on an antidepressant, Johnny committed suicide, therefore...the antidepressant caused suicide.'
This is a bunch of bull. Antidepressants are taken for 'depression', hence the name. A major symptom of depression is suicide. The only thing that the 'Johnny' example proves is the antidepressant didn't do it's job.
Where treating depression gets difficult is that there is no one antidepressant that works for everybody. So getting someone on the right medication can be a challenge for doctors. Especially if the patient isn't communicating effectively about the status of their symptoms. Some people aren't on the right medication and are at risk of all the symptoms of depression.
The true test for an antidepressant is to measure the number of suicides among users and compare that number against the number of suicides committed by equally depressed people who are not on a medication.
Now that the politicians are involved, watch out for the potential of stupid policies being enacted.
If you're on an antidepressant and it is helping, stay on it. If you don't think it is helping, talk with your doctor BEFORE discontinuing!
Posted by Dave at 11:13 PM | Comments (0) | TrackBack
April 13, 2004
Genetic Discrimination Interview
The American Medical News has published an interview with Dr. Francis Collins, head of the Human Genome Research Institute, on genetic discrimination.
Here's what the good doctor has to say about genetic discrimination and testing:
Q: Would you have any qualms about undergoing genetic testing in the current environment?
A: Yes, I would. If I were in a situation where I was confident that a particular genetic test was highly indicated and where the results might give me the information that could provide me with an opportunity to reduce my risk, I would be very interested in the test, but I would have to weigh that against the likelihood that this could result in damage to my employability or to my ability to get health insurance. And that would be a serious factor. I would not take that lightly. I do think the risks, while not huge, are real, and until we have a circumstance where that is effectively outlawed by well-written federal legislation, I would be quite uneasy.
As they say...read the whole thing.
Posted by Dave at 01:18 AM | Comments (0) | TrackBack
April 12, 2004
Medicare Drug Comparisons
According to the New York Times, the government is going to start publishing the prices of medications for Medicare participants. The price comparisons will include both generic and brand-name medications. This will allow consumers to compare the benefits of various drug discount cards (coming in a couple of months).
Keep your eye on www.medicare.gov for more information.
Posted by Dave at 10:08 PM | Comments (0) | TrackBack
April 09, 2004
Controlling Health Care
MedPundit points to an interesting article by Jane Galt called "Who Controls Our Health Care".
At least it will be interesting to policy wonks. The general argument that is being made is that the government already controls a substantial portion of the nation's health care. There is also some interesting (and occasionally intelligent) discussion in the following comment section. There is also a lot of mythology about the quality of the Canadian health care system.
Posted by Dave at 11:08 PM | Comments (0) | TrackBack
March 29, 2004
Worries Hurt Pharmaceuticals
Mathew Holt points out a Barron's piece on the Pharmaceutical sector.
According to at least one analyst, pharmaceutical stocks have been dropping due due to fears that Kerry would institute price controls. This is bad news for the Huntington's community as we need as much investment into the pharmaceutical industry as possible. This could even put some of the younger pharmaceutical's out of business if they are unable to get second-round financing.
Kerry needs to nip this in the bud and announce that he will not institute price controls
Posted by Dave at 06:09 PM | Comments (0) | TrackBack
March 25, 2004
HDSA Legislative Alert
Genetic Information Nondiscrimination Act of 2003
On October 14, by a unanimous vote 95-0, the Senate passed the Genetic Information Non discrimination Act of 2003 (s.1053). The Act was passed in order to insure that individuals affected by a genetic disease would not be discriminated against in health insurance and employment. As was written in the Statement of Administration Policy, (s.1053) “would bar health insurers from denying coverage to a healthy individual or charging the person higher premiums based solely on a genetic predisposition to developing a disease in the future. The bill would also prohibit employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions.”
Although the bill received a unanimous vote in the Senate, (95-0 with 5 abstentions), it has yet to pass through the House and is currently held in Committee in the House Energy and Commerce Committee. While House Democrats overwhelmingly favor passage of the Genetic Information Non discrimination Act not many Republicans favor it.
Your help is needed now. Please take the time to contact your Congressional representative and urge them to support the Genetic Information Non discrimination Act, and make them aware of the impact their choice will have in the lives of so many people.
In order to find the names of the House representatives who support Genetic Non discrimination you can log on to www.house.gov. Under Legislative information click on ‘Find a bill or law’ icon. On the screen that appears type in the bill number, hr1910, and press enter. On the next screen click on the ‘Link to the Bill Summary and Status File’. Once you get to the page, scroll down and you will find a link ‘Cosponsors’, click on it. This list contains the names of all the representatives that have cosponsored the early bill for Genetic Non discrimination. If the name of your representative is not on it then please urge them to become a cosponsor of the new bipartisan bill s.1053. You may also thank those who have signed on to cosponsor the earlier bill for their support and efforts against genetic discrimination.
It is hard enough to live knowing you have a genetic disease, should we not try to make it easier to live with.
You have just received an HDSA BULLETIN. HDSA BULLETINS are swift way to communicate latest news in various areas that interest the extended HD community. As important news items are gathered, we aim to pass them on quickly to our leaders, committees, chapters, social workers and friends. Please feel free to forward these bulletins to other interested parties in their unedited form. To add or remove yourself from the HDSA BULLETIN mailing list, send an e-mail to hdsainfo@hdsa.org and make sure that the subject line reads “HDSA BULLETIN.” Be sure to include your name, e-mail address, and whether you want to be added, removed, or have a change of e-mail in the body of the message.
Kristine Ferrell
Marketing/Communications Coordinator
Huntington's Disease Society of America
158 West 29th Street, 7th Floor
New York, NY 1001-5300
(212) 242-1968, Ext 29
(212) 239-3430 Fax
www.hdsa.org
Posted by Dave at 09:55 PM | Comments (0) | TrackBack
March 13, 2004
Health Savings Accounts
If you don't know about them, you should.
DB's Medical Rants has an article on the new Health Savings Accounts which were created under the Medicare bill passed last year. These are savings accounts where every dollar you contribute is tax deductable (up to the limits). The accounts are to be used for health care expenses. Anything you don't spend accumulates tax-free. After age 59 1/2, you can take money out for non-medical uses and just pay the income tax on it.
That's a great deal! Vist Medrants for more details.
Posted by Dave at 11:00 AM | Comments (0) | TrackBack
February 29, 2004
Canada's Heath Care System Collapsing?
Remember this the next time you hear a politician saying we need to nationalize health care.
Here's the lead from an article in the Toronto Star:
"Canada's premiers say the health-care system will begin to self-destruct by the end of the decade without both an overhaul and a cash influx..."
and the end of the article:
"Ontario Premier Dalton McGuinty said in an interview that he worries that other initiatives...will go unnoticed in the seemingly never-ending health-care fray."
Hat tip to Medpundit for pointing out the article.
Posted by Dave at 04:55 PM | Comments (0) | TrackBack
February 27, 2004
Tit For Tat And We All Suffer
There are days that I'm glad I'm not in politics.
And this is one of them.
Three senators are holding up the appointment of the new head of Medicare and Medicaid. Dr. McClellan, the person they are holding up, is a physician and holds a doctorate of economics. His experience includes heading the FDA.
So what's the beef?
As FDA chief he opposed the reimportation of drugs.
This is a critical time in the life of these two important programs with a number major changes being implemented over the next few years.
And what does the head of Medicare and Medicaid have to do with drug reimportation laws? Nothing.
McClellan has the credentials and the experience. Grandstanding senator's McCain, Dorgan, and Stabenow should be ashamed.
Posted by Dave at 04:36 PM | Comments (0) | TrackBack
February 23, 2004
Uninsured Discount OK
Taken from Mathew Holt's excellent 'Health Care Blog'...
The Bush administration has told hospitals that they ARE allowed to offer discounts to the uninsured. This was under question as mentioned in an earlier article here. It's good to see the administration is paying attention to what is happening in the trenches of health care.
Posted by Dave at 07:21 PM | Comments (0) | TrackBack
February 17, 2004
Help Needed
From HDSA...
IMMEDIATE ACTION NEEDED ON GENETIC NONDISCRIMINATION ACT:
HDSA Advocates! We Need Your Help!
--------------------------------------------------------------------------------
As you know the U.S. Senate passed the Genetic Information Nondiscrimination Act (S.1053) in November just prior to recessing for the holidays. It is the first time that Congress has directly addressed the issue of genetic discrimination
The House however HAS NOT moved this important piece of legislation to the floor for a vote. IT IS ESSENTIAL that you contact Representative Joe Barton (R-TX) who will be assuming the chairmanship of the Energy and Commerce Committee on February 16. It is this committee that must review and move the Genetic Information Nondiscrimination Bill to the floor of the House of Representatives for a vote.
Please send Representative Barton the following message today:
Dear Representative Barton:
Swift passage of the Genetic Information Nondiscrimination Act (S.1053) is essential if we are to protect the rights of millions of Americans from genetic discrimination by health insurance carriers and employers.
As a registered voter, I urge you, as Chair of the Energy and Commerce Committee, to take a leadership position in this important piece of legislation and move it quickly to the floor of the House of Representatives for a vote. As a member of the Huntington’s Disease community, I also urge you to personally support its passage. No other piece of legislation directly addresses the issue of genetic discrimination.
I applaud the U.S. Senate for recognizing the importance of the Genetic Information Non discrimination Act (S.1053) and look to the House of Representatives for a similar favorable action.
Sincerely,
Your Name
You can contact Rep. Joe Barton in the following ways:
Writing: 2109 Rayburn Bld, Washington, DC 20515
Phone: 202-225-2002
Fax: 202-225-3052
Email: Click on Write Your Congressman. Select www.house.gov and then follow directions to access the home page for Rep. Barton. You can email Rep. Barton directly from this site. Simply copy and paste the message above and be sure to add your name.
Time is of the essence. Please act before February 19th when Rep. Barton takes over as the Chair of the Energy and Commerce Committee. Let him know how important this issue is to you today!
--------------------------------------------------------------------------------
*Statements and opinions that you may express when you Write Your Own Letter may not be necessarily those of the Huntington's Disease Society of America (HDSA) but they DO reflect on HDSA as the means that you used to relay your opinion to your elected officials. We therefore ask that Econstituent be used only to express your support or opinion about the issues or proposed legislation that HDSA posts. If you wish to write a letter on another issue or legislative act, please do so but we ask that you send it through a vehicle other than Econstituent. If you need contact information for your elected officials, please go to www.house.gov/writerep or www.senate.gov.
Posted by Dave at 07:04 PM | Comments (0) | TrackBack
February 15, 2004
HMO's and Medicare
In a weird way, Congress set the stage for future savings when it raised payments to Medicare HMOs in last year's Rx drug bill.
That's the opinion of a recently published policy think tank paper (hat tip to The Health Care Blog). They argue that HMO's have the affect of reducing Medicare costs. As counter-intuitive as it seems, they do have facts that back them up. Check it out here for yourself.
Posted by Dave at 10:34 AM | Comments (0) | TrackBack
February 08, 2004
Health Care Politics
"I worry that the politics of health care will undermine real progress."
That's what DB's Medical Rants has to say about the health care debate in Washington. I have the same worries also. We have some very real needs, but election year politics could cripple efforts to address those needs.
I do believe it's an advantage for the Huntington's Disease community that a Doctor is leading the Senate. Dr. Frist has shown a genuine interest in improving health care policies.
Now that it looks like Dr. Dean will not be the Democrat's presidential nominee, that leaves Dr. Frist as the most visible medical advocate for improving the quality of health care. Let's hope that he can be effective in driving the national health care debate.
Posted by Dave at 09:40 AM | Comments (0) | TrackBack
February 04, 2004
Scientists Fighting Insurers
In the United States we are waiting for the House of Representatives to pass the Genetic Anti-Discrimination bill that was passed to them from the Senate.
In England, they only have a ban until 2006 and scientists there are fighting for the rights of those with Huntington's Disease and other genetic diseases.
"A powerful group of scientists will next week try to stop the creation of a new underclass of people unable to get insurance.
Fears are increasing that if insurers get their way, people with inherited genetic flaws likely to lead to illnesses such as some forms of breast cancer, Huntington's disease, bowel cancer, Alzheimer's disease and ovarian cancer could be barred from taking life insurance.
This could prevent them getting a mortgage as well as blocking them from buying life insurance to protect their families if they die young."
We need that anti-discrimination bill...call Congress and tell them.
Posted by Dave at 06:48 PM | Comments (0) | TrackBack
February 01, 2004
3 Things Congress Should Do
If the government wants to make the supplement industry safer for us, here is what I propose they do:
1) Create and enfore dosage labeling laws. When a supplement says it has 100mg, then it better have that amount. This is a horrible problem in the industry.
2) Crack down on false advertising. Much of what is complained about is already illegal, but there is very little enforcement.
3) Create and enforce purity standards. There is an unacceptable amount of cross-contamination between products, especially from Chinese manufacturers.
Now is that so hard?
Posted by Dave at 03:05 PM | Comments (0) | TrackBack
Your First Warning: DSHEA
In 1994 Congress passed the Dietary Supplement Health and Education Act (DSHEA) which freed up companies to manufacture and market dietary supplements. Now the supplement industry is a huge multi-billion dollar segment of the economy. This law is the reason our community now has coQ10, fish oil, and creatine; substances that MIGHT keep some of those with HD healthy long enough to benefit from upcoming treatments.
With the freedom that DSHEA provided, came abuses and now the government is looking at changing the law. And there is a lot of support for changes. Just a few weeks ago, ephedra was successfully banned. (Ephedra is not of interest to our community, but it was not as bad as was reported in the popular press.) Now they are looking to expand the band to other supplements such as the "steroid precursors". If they succeed, don't expect them to stop there. There are many who would like to totally end the supplement industry.
This would mean no coQ10, no fish oil, and no creatine.
Is this likely to happen? Probably not. The industry is now large, has an effective lobbying skills, and has a key senator on their side (Orin Hatch). However, we could lose a supplement that is important to our community.
But keep a close on the upcoming legislative efforts. Our future health depends on it.
Posted by Dave at 02:48 PM | Comments (0) | TrackBack
January 31, 2004
Medicare Bill Costs Underestimated
This is yesterday's news but...
When Congress voted on the Medicare bill, they estimated the cost at $400 billion. However, the Bush administration calculates that the cost really will be $530 billion. So Congress was off by only $130 billion!
Scrappleface, one of the best-written humor websites, has written a parody 'news' article - "Wealthy Senators to Cover $130B Medicare Drug Gap".
Posted by Dave at 06:06 PM | Comments (0) | TrackBack
January 27, 2004
Bad Day For Huntington's Research
The protestors won and more people will die because important research is being delayed.
A few weeks back I wrote about the Cambridge's new research facility and those who were against it. The facility was going to be a premier facility for studying Huntington's Disease and other incurable disease.
According to the London Times, Cambridge has decided to cancel it. The reason it was cancelled? Cost, security demands, & new regulations.
It's a crying shame.
Posted by Dave at 07:53 PM | Comments (0) | TrackBack
January 26, 2004
Does Disease Disqualify The Candidate?
RangleMD has written about Howard Dean having suffered from anxiety attacks in the 80's. He takes to task one blogger who feels this is reason enough for Dean not to be president.
Dr. Rangle makes these points:
"Depression and anxiety disorders (which often are tightly connected to each other) are very common conditions and many more people in government and in public life suffer either from major clinical depression and/or anxiety than most people will ever know....
Why do we still consider people with such common mental health illnesses such as depression and anxiety to be unable to function in life the way "normal" people do?"
He's right too. Depression hits 20% of American's in any given year. The Huntington's community has more than it's fair share of depression, both in pHD's and in the caregivers. Fortunately, treated properly, those with anxiety and/or depression can and do lead normal lives.
Posted by D