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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 28, 2004
What We Don't Talk About
There is one, big elephant in HD's living room that nobody discusses.
If you look through the over 6200 studies and articles related to Huntington's Disease, you'll find virtually no mention.
If you do a search on the web, you probably won't find anything.
If you go through the literature on Huntington's Disease you won't find it.
Yet it is common in our community. Care to guess what it is?
It's spousal abuse of caregivers.
A significant number of caregivers are abused, physically and otherwise, by the person they are trying to take care of.
I know of examples of physical abuse that go back at least three generations in one family. One time when I was with a group of former caregivers the topic came up and many admitted that they had been abused by their spouses.
It's real, it happens, and if you are being abused you are NOT ALONE!
It's time that the doctor's and other health care workers pay attention to this. It's time we provide resources for those in these situations so they'll know what to and/or have someplace to go.
Does abuse happen in every situation? No.
Does it happen in MOST HD caregiving situations? I don't know.
If I had to guess, I'd say it happens in at least 1/3rd of the caregiving situations. Carol Carr isn't the only one this has happened to!
It's time we address this issue in our community. HDSA and other HD support organizations...are you listening?
Posted by Dave at 11:44 PM | Comments (1) | 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 26, 2004
Dr. Don King
The HDSA website marks the passing of Dr. Don King. Here's some of what they have to say:
"Don King had a vision – one that promised a brighter future for those who lived “at risk”, for those affected by this devastating disease and for those who cared so lovingly for them. His leadership, strength of character and insight fostered a spirit of collaboration that brought together the diverse segments of the HD community. Today, thanks to the efforts of this one extraordinary man, we are a “family” working together towards one goal – a future free of HD.
It is with regret that we bid farewell and say a final thanks to Donald King, Ph.D. His memory will burn brightly in the hearts and minds of our HD families everywhere and with the staff with whom he worked so closely."
And...
"HDSA has established the Don A. King Memorial Fund for Care and Cure. If you would like to make a donation today, please contact the HDSA National Office at (800) 345- HDSA. All gifts will be matched 2:1 by the HDSA Research Matching Gifts Challenge Fund. Please consider making you donation today in memory of someone who gave so much to the care and cure of HD."
Sincerest condolences to his friends and family. There is no doubt his passing leaves a hole in our community.
Posted by Dave at 08:22 PM | Comments (0) | TrackBack
February 25, 2004
HD & Homocysteine
Interesting.
A new study, just published in the Movement Disorders journal, found that Huntington's Disease patients had "significantly increased" homocysteine levels. If the word 'homocysteine' sounds familiar, it's because researchers have found that elevated levels of this amino acid are strongly associated with heart disease and stroke.
Have you noticed that doctors are making the same recommendations for Huntington's Disease as they are for heart health? I've noticed it, and so has HD Lighthouse as evidenced again in their latest article.
In this study, the researchers theory is that homocysteine causes neural cells to die prematurely. If that is the case, then perhaps those with HD should take steps to lower their homocysteine levels.
So how do heart patients lower their levels? They do it with over-the-counter supplements. The key ones being folic acid, b12, and the whole b vitamin group. These might have the same affects in HD patients.
WARNING: These vitamins are considered to be safe in moderation, but...there can always be circumstances were supplementation could be harmful. TALK TO YOUR DOCTOR before diving into these supplements.
Also, this theory is not proof! It could be that homocysteine levels are a symptom, not a cause of the the HD process. It's entirely possible that lowering homocysteine levels does nothing to affect HD.
BUT...it is good solid advice for Huntington's Disease patients (or anybody really) to follow the recommendations for good heart health: Excercise, eating right, taking anti-oxidants, etc.
And always consult with your doctor, the best expert you can have on your health.
Posted by Dave at 10:06 PM | Comments (0) | TrackBack
February 24, 2004
The Judge Gets It
The Judge got upset and I don't blame him a bit!
A 42-year-old man with significant symptoms of Huntington's disease was kept in jail with the general population for over 6-months. He had been arrested for various motor vehicle violations.
The judge asked that his comments be published and here is what he said:
"The Department of Human Services must not continue to ignore people like Mr Barby," he said.
"I want to make it clear that it is the responsibility of the Department of Human Services to make adequate arrangements for people like Mr Barby.
"In my view, it's inappropriate to impose on the court in these situations.
"Unfortunately, while this case has dragged on, the care of Mr Barby has not been assessed by the department." Mr Coghlan also expressed disappointment the Department of Justice had not made any attempt to transfer Mr Barby to an appropriate mental health centre."
You can read the whole article here.
Posted by Dave at 07:14 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 22, 2004
Ralph Nader
Party Affiliation: Independent
Official Website: http://www.votenader.org/
Official Candidate Blog: No
Website Information Relating To Medical Research: No
Website Information Relating To Health Care: Yes
Website Analysis: Nader would be a disaster for the Huntington's Disease community.
First, he advocates a single-payer health care system which every time it has been tried has forced health care rationing. Medical care to those with incurable diseases, such as Huntington's, are the first to suffer under a rationing program. Surprisingly, he hints at this in his brief comments on health care when he mentions "cost controls".
Second, he is very anti-large business. Unfortunately, pharmaceutical and genetic research requires the deep pockets of large businesses. It can cost $100 million to develop a new drug. Small businesses don't have the resources to conduct this kind of research.
Third, Nader would implement taxes on stock trades...even if the investor lost money. This will reduce investments in pharmaceutical and genetic companies which reduces the amount of money that is available for research.
CONTACT INFORMATION:
Nader for President 2004
P.O. Box 18002
Washington, DC 20036
info@votenader.org
Posted by Dave at 12:22 PM | Comments (0) | TrackBack
February 21, 2004
Why Drugs Fail
Have you ever wondered why drugs fail in drug trials?
Derek Lowe, in his Drug Discovery blog, discusses this at length in an article that is definitely worth a read for those who follow drug trials. Here is a summary:
46% drop out from lack of efficacy
17% from animal toxicity (beyond the usual preclinical tox)
16% from adverse events in humans
7% from bad ADME properties
7% from commercial decisions
7% from other miscellaneous reasons
Posted by Dave at 05:28 PM | Comments (0) | TrackBack
February 20, 2004
Diet & The Brain
HD Lighthouse has a good piece on diet and preserving the brain worth reading. Study after study shows that diet can affect the health of neural cells.
While the study referenced isn't specifically about Huntington's Disease, Jerry is absolutely correct when he mentions that HD is age related. What he means is that the process that causes the early death of neural cells in HD is very similar to the process of cell death due to age. You can read the whole thing here.
Posted by Dave at 06:46 PM | Comments (0) | TrackBack
February 19, 2004
Solving the BBB
I love hearing news like this!
One of the big challenges in treating Huntington's Disease is the Blood-Brain Barrier (BBB). The BBB does an excellent job of keeping viruses and other nasties out of the brain. It also does a good job of keeping out needed drug and genetic treatments.
Researchers have developed a "trojan horse" method of delivering treatments to the brain. Here's an excerpt:
"They deliver specific substances to the brain by attaching them to a protein that is normally able to cross the barrier.
Once a drug has crossed the blood-brain barrier, it can travel the extensive network of blood vessels that nourish the brain, thereby reaching virtually every neuron in the brain. ..."
"Pardridge has developed a system that uses the transporter protein to allow several types of molecules into the brains of mice, rats and monkeys. For example, he has delivered molecules that protect neurons, a feat that could pave the way for their use in patients with stroke or spinal cord injury. "
A system that protects neurons...that sounds just like what Huntington's Disease treatments need to do.
Posted by Dave at 07:37 PM | Comments (0) | TrackBack
February 18, 2004
Dean Dropping Out Of Race
Published reports state that Howard Dean is dropping out of the presidential race. This is a shame as his health care policies were the best of the Democratic candidates (at least for the HD community).
Posted by Dave at 08:23 AM | Comments (0) | TrackBack
Discovery Brings Hope
Good news from Australia. Scientists are finding "new evidence" about how Huntington's Disease progresses. An excerpt from the article:
"Despite the strong genetic factor, our recent evidence from a mouse model with a human Huntington's disease gene mutilation suggests environmental factors play a major role in the disease's onset and progression," Dr Hannan said.
"This discovery implies that understanding how gene-environment interactions affect the function of networks of nerve cells is important for all brain diseases, including those caused by an inherited mutation in a single gene."
Posted by Dave at 05:55 AM | 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 16, 2004
Teen Raises $200,000 For HD
One person can make a difference.
Seventeen-year-old B.J. Viau founded the Twin Cities Shoot for a Cure Huntington's Disease Hoop-a-thon. He founded it after his mom was diagnosed with HD. In the six years this event has been running, over $200,000 has been raised! Here's the press release for the event...Thanks B.J.!!!:
Loss Control Solutions Announces Corporate Challenge at 2004 Annual Hoop-a-Thon
MINNEAPOLIS--(BUSINESS WIRE)--Feb. 16, 2004--
Son of LCS President Bryan Viau spearheads Hoop-a-thon to benefit medical research for Huntington's Disease
Seventeen-year-old B.J. Viau, founder of the Twin Cities Shoot for a Cure Huntington's Disease (HD) Hoop-a-thon, plans to share the spotlight at this year's event with teen star Billy Aaron Brown of "8 Rules for Dating My Teenage Daughter." B.J. Viau is the son of Bryan Viau, president of Minneapolis-based Loss Control Solutions, a provider of the financial industry's most widely used investigative case management system.
In its seventh year, the Twin Cities Hoop-a-thon, which benefits medical research toward finding a cure for HD, promises to be a success. The Hoop-a-thon event takes place on March 7, from 1 p.m. until 4 p.m. at Falcon Ridge Middle School in Apple Valley, Minn. At the event, participants shoot free throws for five minutes, and sponsors pledge a specific amount of money for every basket that the sponsored shooter sinks. This year, LCS will be sponsoring or pledging money for every basket made by the Eastview High School basketball team and challenging other sponsors to match those pledges. Additionally, an anonymous donor will match all money raised - dollar for dollar.
Huntington's Disease is an inherited genetic disorder resulting in a slow and irreversible loss of both mental and physical capacity. There are 30,000 people in the United States currently diagnosed with HD, and each of their siblings and children has a 50 percent chance of developing the disease.
Over the past six years, the event has raised approximately $200,000 for medical research. Funds from the 2002 and 2003 Hoop-a-thon are being used to fund research conducted by Dr. Janet Dubinsky, associate professor in the department of neuroscience at the University of Minnesota in Minneapolis.
The Hoop-a-thon was founded by B.J. Viau after his mother, Debbie, was diagnosed with HD several years ago. The event is a commitment from the entire Viau family to make a difference for those with the disease. In 1999, the Minnesota Timberwolves recognized B.J. as a "Hero in the Making" for his exceptional efforts. In 2000, B.J. received the inaugural "Youth Alliance Award" at the International Convention of the Huntington's Disease Society of America in Orlando, Fla., for his commitment to making a difference.
"Hosting an event like the Hoop-a-thon has enabled me to understand people's compassion," said B.J. Viau. "The funds we've raised for research on Huntington's Disease will have a tremendous impact on those who suffer from it as well as their loved ones. We hope that this event continues to have a dramatic effect on people's lives."
Bryan Viau, B.J.'s father, said the impact this event has had and continues to have is inspiring. "As a father, I am truly proud and touched by my son's efforts over the past seven years," said Bryan Viau. "His efforts, motivation and ambition to not only create an event but sustain it in its seventh year is truly impressive. My hope is that the event will continue to build awareness and raise funds for a disease that has impacted so many people."
About Loss Control Solutions
Founded in 1996 in Minneapolis, Minn., Loss Control Solutions provides management software systems and services for the financial services industry. The company's flagship product, Investigation Case Management System(TM) (ICMS), manages workload and data for loss prevention, corporate security, compliance and anti money laundering personnel and provides the capability to identify patterns and profile areas requiring further analysis. Loss Control Solutions is the provider of choice for loss prevention, security and risk management for many leading U.S. banks, thrifts, savings and loans, and credit unions, including 29 of the top 100 U.S. banks, which are currently using ICMS. Loss Control Solutions is a subsidiary of VTI Security Integrators with offices in Minneapolis and Denver. Visit VTI's Web site at www.vtisecurity.com.
To find out more about the Hoop-a-thon, contact B.J. or Bryan Viau at 952-891-1841 or visit www.hoopathon.com.
Posted by Dave at 06:35 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 14, 2004
Candidate Health Care Stands
The British newspaper The Guardian has an article on the policy positions of the American presidential candidates.
One thing stands out, there is little there that is of particular interest to the Huntington's Disease community. The health care policies that I'd like to see from all the candidates are: public funding of medical research, policies affecting privately funded research (pharmaceutical & genetic), mental health parity, genetic discrimination, medicare & medicaid rules. Here's an excerpt from the Guardian article:
HEALTH CARE
Bush: Number of Americans without health insurance has risen in his presidency, reaching 43.6 million in 2002, up from 41.2 million in 2001 and 39.8 million in 2000, according to Census Bureau. Has won passage of prescription drug benefit for older Americans that will subsidize costs for low-income patients and encourage private insurance companies to offer coverage for the elderly willing to opt out of traditional Medicare. New tax-free medical savings accounts can be opened by people under 65 who meet certain conditions.
Dean: Expand state health insurance program for poor children to include kids from moderate-income families, young adults and the working poor. Tax credits to help workers of moderate income buy affordable coverage similar to that offered to federal employees, with extra insurance subsidies for companies employing fewer than 50 people. Federal government to pay 70 percent of temporary insurance costs for people between jobs, with former employers required to extend coverage for additional two months.
Edwards: Tax breaks to make children's health coverage affordable to families that agree to buy it. A family of four earning less than $60,000 would pay less than $370 a year for their kids' insurance; a lower income family of four would pay about $110. Infants to be enrolled at birth in either government health care programs or private insurance. Children up to age 21 would be required to sign up when they visit doctors' offices or start school. Also, advocates subsidies to help two-thirds of uninsured adults buy coverage. People aged 55 to 65 could buy into Medicare, and unemployed workers who are not wealthy could continue coverage from their last jobs with 70 percent federal subsidies.
Kerry: Expand existing insurance system for federal employees to private citizens through tax credits and subsidies. Unemployed would get 75 percent tax credit to help pay for insurance. Tax credits for small businesses and their employees for health insurance. People aged 55 to 64 could buy into federal employees' health plan at affordable price. Government would help companies and insurers pay an employee's catastrophic medical costs if the firms would agree to hold down premiums. Federal support to expand access to state-administered health insurance for children.
Kucinich: National health insurance providing single-payer universal health care.
Sharpton: Amend the Constitution to enshrine the right to health care of equal quality for everyone.
Posted by Dave at 10:37 AM | Comments (0) | TrackBack
February 13, 2004
Derek Nails It Again...
Derek Lowe of the excellent Drug Discovery blog has an article on his website about a drug trial that Eli Lilly is conducting.
In particular, Derek takes to task Greg Easterbrook for his sharp critique of Eli Lilly's handling of an anti-depressant drug trial. The topic is an obvious one, a college freshman who was in trial committed suicide. The implication made by many is that the anti-depressant caused the suicide. However, Greg Easterbrook had a field day charging Eli Lilly as "heartless" and essentially as a murderer.
Greg points out that those taking the drug had a higher suicide rate than the population at large. Damning right?
Wrong. The most serious side effect of depression is suicide. When you compare the suicide rate for those with depression who aren't taking the drug, as Derek did, you find that the drug actually had a lower rate of suicide. In fact it was 10 times lower than it was for people taking OTHER anti-depressants.
Hmmm...I don't know about you, but I would want to take the drug that is 10 times more likely to keep me alive. Wouldn't you?
Right now it is sport for some to attack pharmaceutical companies. When you hear the criticisms, realize this is one of the most regulated industries in the country with very strick protocols for testing. Keep your eyes open.
Go read Derek's article, it's worth your time.
Posted by Dave at 07:32 PM | Comments (0) | TrackBack
February 12, 2004
LAX-101 Update
After months of wondering, we now have an inkling of what is happening with LAX-101.
A year ago, we found out that the expected FDA approval didn't happen because too many patients dropped out of the Phase III trial. Amarin then promised to reconduct the study. Since then, nothing has leaked out of Amarin as to the status of the trial. As it turns out, Amarin did not start a new study in the past year. Probably because they knew they didn't have the money to finish it.
So where does it stand now?
Amarin has sold off much of their company, but they've kept the rights to market LAX-101 in the United States. They say they are moving forward to conducting the new Phase III trial.
Does Amarin have enough money to pull it off?
Hard to say. There hasn't been enough information released to determine that.
If they do have the money, how long before (a hoped for) FDA approval?
I would estimate sometime in 2006.
Don't be too disappointed, LAX-101 is essentially purified EPA which is found in fish oil. You can get the equivalent dose by taking enough fish oil to obtain 2000mg's of EPA a day. Not only might it slow down the progression of Huntington's Disease, it may offer benefits for your heart and your overall health.
Here's the Amarin press release. Special thanks to kind reader who notified me of this earlier today!:
Amarin Corporation Announces Asset Sale To Valeant Pharmaceuticals International
--Amarin Retains Exclusive U.S. Rights to LAX-101 for Huntington’s Disease—
LONDON, United Kingdom, February 12, 2004 – Amarin Corporation plc (NASDAQ: AMRN) today announced that it has entered into a definitive agreement with Valeant Pharmaceuticals International (Valeant) (NYSE: VRX) whereby Valeant will acquire its U.S.-based subsidiary, Amarin Pharmaceuticals, Inc. and a majority of its U.S. products in a cash transaction valued at approximately $46 million, including $8 million in milestone payments. In addition, Valeant will assume certain other outstanding liabilities, including Amarin’s obligation to make a milestone payment to Elan of $10 million, if sales of Zelapar reach a certain level.
Under the terms of the transaction, Valeant will make an initial payment of $38 million to Amarin Corporation for the company’s interests in Amarin Pharmaceuticals Inc. along with the rights to Amarin’s product portfolio, which includes Permax®, a product indicated for the adjunct treatment of Parkinson’s disease; a primary care product portfolio with a broad range of indications and Zelapar™, an in-licensed, late-stage development product for the adjunct treatment of Parkinson’s disease, which has received an approvable letter from the Food & Drug Administration (FDA). The agreement calls for Valeant to make a milestone payment to Amarin Corporation of $3 million following the successful completion of the previously announced Zelapar clinical safety studies, and a further milestone of $5 million upon final approval of the Zelapar NDA by the FDA.
Amarin Corporation will retain responsibility for certain activities during a transition period post closing of the transaction, including the supervision of the Zelapar clinical safety studies and inventory management among other obligations. Amarin will be responsible for funding costs and liabilities relating to these activities totaling $12.5 million at closing.
Amarin will retain exclusive U.S. rights to LAX-101, a compound in development for the treatment of Huntington’s Disease. Following the transaction, Amarin Corporation will concentrate on working with Laxdale Limited, the developer of LAX-101, to progress the compound through additional Phase III clinical studies. LAX-101 has undergone one Phase III trial, which identified promising results, and preparations are underway for an additional Phase III study in the United States.
Rick Stewart, chief executive officer of Amarin Corporation, stated, “This transaction permits Amarin to resolve its immediate financial obligations, including a payment due this quarter to Elan Corporation, allowing the company to focus on bringing significant compounds to market and restoring shareholder value. Amarin’s future efforts will concentrate on progressing the studies for LAX-101, selectively in-licensing late stage development compounds and acquiring promising compounds where available.”
Amarin anticipates that the net proceeds of the transaction will be sufficient to pay the financial obligations due to Elan Corporation.
Amarin and Valeant have received early termination of the waiting period under the Hart-Scott-Rodino Antitrust Improvements Act. Closing of the transaction remains subject to customary contingencies in a transaction of this nature, including the receipt of any required third party approvals. Amarin was advised by SG Cowen Securities Corp.
For press releases and other corporate information, visit our website at http://www.amarincorp.com.
Posted by Dave at 07:44 PM | Comments (0) | TrackBack
February 11, 2004
Lost A Good One
This one hurts.
We lost one of the truly precious gems in the Huntington's Disease community this week - Lou Wilkinson. I had the chance to met her, my loss, but I've followed what she's written and what others have written about her.
No...it wasn't HD that took her life, it was (by at least one report) the Canadian health care system which rushed her out the clinic door with a diagnosis of "flu" and missed the pneumonia and bacterial infection.
In case you didn't know her, here is what some of her friends are saying on Hunt-Dis:
"Lou has been active for years in HD awareness throughout Canada, appearing on national TV programs, giving special sessions to people new to HD, raising funding for HSC. Lou also helped with HD awareness in the US as well. ... And, Lou served on the Hunt-Dis Convention Scholarship Fund committee since it's inception, painting beautiful pictures to help raise funding to send people to an HDSA national convention."
"Good night sweet, dear friend. I know you didn't leave this world willingly for you were a fighter. A lady whose love, dignity and intelligence always
shined through and touched so many, many, hearts. Well will miss you so
terrible much but find some small comfort in knowing you will be up there with our other HD hero's, still fighting to help those with HD."
"She always wrote to me privately when I was down or bad stuff was happening over the past 7 years, and was always encouraging. At conventions she kept me laughing. She, like many others on this list, was like a second mother to me."
"She was the first person with HD I learned from, and continued to learn from, and that helped me to understand my husband and my role as his caregiver."
"I always looked forward to her posts. No matter who she replied to or what their situation, I came to expect and love her honest and down-to-earth responses, her gently spooned doses of reality with just the right touch of compassion and understanding."
"Lou Had all the Attributes that most of us aspire to, Love, Compassion, Forgiveness, But most of all she shared these Qualities with all she came in Contact with, She loved life and those who struggled daily to come to terms with this horrid Disease, we will all continue to feel your Guiding presence on this Road we are traveling."
"Many times she offered advice to me and I always admired her honesty, compassion, and strength."
"Lou met a guy from Illinois last year at the Houston National Convention, as usual, in the bar area...he was crying over the fact that this was the first convention he'd been to without his wife, who'd recently died due to HD. It was Lou who could lift a person up with her compassion and energy towards fighting this terrible dragon that we all battle. She sat and talked with this guy for well over an hour as he desparately needed someone to talk to."
"I remember most Lou's sense of humor. Like, when she was still teaching, how she made funnies about trying to hide her symptoms."
"God will love having her. We did."
"I never had the privilege to meet her but her poems and posts made you feel as if you knew here. The tears are streaming down my face because we have lost a true warrior for HD."
"Convention won't be the same without Lou. But we can continue to honor her by living "with" HD, carrying the banner as an HD warrior or advocate, and living each day to the fullest."
"Lou, you will be sorely missed, but never forgotten."
"Today I found out that a good friend passed away. The hole in my heart is so big, I don't know if I can close it. As I choke back the tears, I feel betrayed and alone. She understood me. She is gone. No one else knows the way I feel or can even touch the HD fears we both shared."
"Lou was one of the first people I met from Hunt-Dis when in Orlando. She adored my Shane and talked to him so naturally about being symptomatic. He has never thought he was before but so appreciated Lou's natural and honest converstion."
"After the national convention in DC,Lou came to my house to visit. I had to pick her up in downtown Norfolk,as she was shuttle bused there from the train. She was the first to step off the bus,dressed to the nines,and using a cane.I said, gee Lou, I didn't know you needed to use a cane, she replied, I don't but it gets me on the bus first and off first!"
"There is a little grave in a field along side the road to Nags Head, Lou made me stop. This grave has all kinds of things on it,like a small wooden church,dolls,fake flowers, Lou was so facinated that she ran across the field and took a photo of it. I pass it everyday and don't even notice it."
See some of what Lou wrote on these two websites:
http://www.members.shaw.ca/louwilk/
http://www.bridger.freeuk.com/quirks.html
Now that you've learned a bit about this special spirit, here's something you can do (also from the Hunt-Dis email list):
Anyone who would also like to make donations to the fund in Lou's memory may do so by sending a check made out to :
HDSF
c/o Dave Hodgson
1526 Applegate Drive
Naperville, Illinois 60565
If making your donation in Lou's memory please attach a note or memo. I will keep these and then forward them to her family.
Posted by Dave at 08:03 PM | Comments (0) | TrackBack
February 10, 2004
Clark Dropping Out?
Word is leaking out that General Clark is dropping out of the Presidential race.
UPDATE: Clark is set to announce this tomorrow in Little Rock, AK. This is not a loss as far as the HD community is concerned. His health care platform seemed to lack depth and cohesiveness. His one bright spot was his support for parity in mental health benefits.
Posted by Dave at 09:11 PM | Comments (0) | TrackBack
Fast Cheap Way To Silence Genes
People with Huntington's Disease have one gene that makes a defective huntingtin protein and another gene that makes a 'good' huntington protein.
Suppose gene therapy could 'silence' (or stop) the one gene from creating the defective huntingtin protein? Scientists are working on this and other paths to treat Huntington's Disease with gene therapy. The cure is coming, but research takes time. But researchers are quickly getting better at speeding up research. Here's the latest, courtesy of Future Pundit:
"The group tested their approach by creating a handful of siRNA molecules to genetically disable three known genes. In each case, their technique generated siRNA that effectively blocked the gene in question."
"Wehrman said this technique of creating siRNA molecule libraries could be widely used to find genes that, when disabled, cause cells to become cancerous or alter how the cells respond to different drugs. These genes could then become potential targets for drugs to treat disease."
and
"Here is yet another reason why the rate of advance in biological research is accelerating. Better tools and techniques speed the rate at which experiments can be done and increase the amount of information that can be collected."
Read the Stanford Press Release here.
Posted by Dave at 07:27 PM | Comments (0) | TrackBack
More on R&D Costs
Derek Lowe of the Drug Discovery blog has another article on drug development costs. Derek knows what he is talking about, after all he IS a drug researcher.
Check out his article called "Darn Those R&D Costs, Anyway". If I haven't made it clear before, let me make it crystal clear now...
The cure for Huntington's Disease depends on research, expensive research. If some people were to have their way, research money geared toward HD would dry up so that others would have "cheaper" drugs.
Posted by Dave at 07:07 PM | Comments (0) | TrackBack
February 09, 2004
HD2004
The HD Foundation has announced their biennial symposium for Huntington's Disease researchers - HD2004: Changes, Advances, and Good News (CAG)n. It will be held August 12-15, 2004 at the Royal Sonesta Hotel in Cambridge, MA.
Any HD symposium that includes in the name "Advances" & "Good News" has to be a good one. Let's hope it lives up to its name!
Posted by Dave at 06:59 PM | 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 07, 2004
Shana Martin
I've heard, more than once, people in our community wish that Huntington's Disease had a celebrity representative. Somebody who could bring needed attention and interest to HD.
One person you should be aware of is Shana Martin. An athletic marvel, she is a world champion logroller, all-state gymnast, black belt in Karate, pole vaulter, triathalete, and a top fitness competitor and model.
She is also at risk for Huntington's Disease.
And she isn't hiding it. In fact, she talks about HD on her website and about her experiences of living in a family coping with the disease.
A couple of years ago, the Milwaukee Journal Sentinel did a writeup on her and Huntington's Disease. Here's an excerpt:
From the day the doctors diagnosed the disease and explained how it would eventually affect the family, Deborah and George Martin worked to ensure their daughter would have as full a life outside the home as possible.
The result: Shana Martin essentially became a charter member of the local YWCA. She was signed up for classes in swimming, gymnastics, ballet and log-rolling, though not all at one time.
"Her mom started her in all these activities," George Martin said. "When her coordination became so bad that she had to give up driving, I kind of inherited the role of taking Shana to all the activities."
The frenetic pace was exhausting but comforting.
"I'd go to gymnastics and didn't think about my problems anymore," Shana Martin said. "It was a place to let go."
Shana Martin was a competitive gymnast at Madison Memorial High School. She grew to love log-rolling so much she participates in lumberjack competitions every summer in Hayward and in other towns across the country. She was the first female pole-vaulter at Memorial and has competed on the Wisconsin track team for four seasons.
Her most joyful experiences come from working with others. She has worked for Special Olympics. She serves as an instructor at UW in a fitness class for persons with disabilities. And, as a Kineseology major and a certified personal trainer, she hopes to help others live healthy lives.
"What we do is we teach students who want to learn how to work with people with disabilities," she said of the UW class. "And it also benefits the people with disabilities because they come in and get an exercise program.
We need more people like Shana...
Thanks Shana!
Posted by Dave at 04:46 PM | Comments (0) | TrackBack
February 06, 2004
Florida HD Conference Update
Jean Miller, one of the most special people in the HD community, has been working hard setting up and promoting the recently completed Florida Huntington's Disease Conference.
If you weren't able to make the conference, here is Jean's writeup on the event. Sounds like it was a fantastic event!
Florida HD Conference...
...was, in our eyes, such a HUGH success!! People traveled from all over the state of Florida and we even had a couple visiting the east coast of
Florida [from New Jersey] who attended! There were about 80+ people in
attendance both days and, for our first attempt at putting together an HD
conference, we were elated to see the auditorium full! There were HD
families who attended who, even in today's internet age, are living in a small town somewhere still thinking that they were all alone in living with this disease and had no idea of the help and support that is available to them.
Carmen Leal, our own Faces of HD and Portraits of HD author, was the conference MC and also gave a warm and humorous session on JOY. As Carmen told the audience; this was the first ever conference she has attended that was offered at absolutely no cost to those who attended. This, of course, would not have been possible without the support and contributions of many, many wonderful sponsors who helped pay [or donated] costs of printing, Grace Healthcare who provided the facilities for the conference including manpower, all the food for breaks and lunches [WOW was there food], HDSA providing literature on consignment and the dedication of the conference Committee Members whose endless hours of efforts saw this dream of a conference for HD families become a reality!
The guest speakers, all who donated their time, did an outstanding job and were very knowledgeable in HD, providing excellent information to the HD families and the professionals who serve them [and we had several in
attendance!]:
Drs. LaVonne Veatch Goodman & Nathan Goodman Founders of the Huntington's Disease Drug Works talked about this exciting new program and the clinical trials that will be starting and how people with HD can participate. Please make sure you visit the HDDW website to http://www.hddrugworks.org/ to learn more and find out how you can participate in your area of the country.
Dr. Juan Sanchez-Ramos, M.D., Ph.D. who is on the staff at the University of South Florida as Director of the Huntington's Disease Clinic in Tampa talked about his interesting experiences in participating in the Venezuela HD Project, provided current information on some of the Huntington's Study Group's research projects, and other area's of hopeful research being done on HD. We are all pulling for the USF HD Clinic to become the first HDSA Center of Excellence in Florida!
Sean W. Scott, an Elder Law Attorney in the State of Florida, talked about the "facts" and the all too frequent "misleading" information relating to getting SSDI, Medicaid, Medicare, placement, advance directives, etc.. Besides being very knowledgeable in what HD families need to know, Sean demonstrated his compassion and understanding towards all of our Florida HD families and his willingness to be of help.
Gilda O'Brien, a Social Worker and Caregiver Consultant for the offices of Sean W. Scott, Elder Law Attorney, gave a very humorous presentation on living with dementia. This committee can not thank Sean & Gilda enough for their support to this conference.
Karen Milek who is the Huntington's Disease Society of America's "Huntington's Disease Person of the Year 2003". Karen's message was full of enthusiasm and joy and left everyone with hope, tears and a renewed inner strength! What a DYNAMIC lady!
Karen Karle, Ph.D., President of Dementia Caregiver Resources, Inc. a non-profit organization dedicated to helping caregivers. Karen gave a presentation on the spiritual aspects of living with dementia which taught us all a little bit more about ourselves. Karen is an "HD Friend Extraordinaire" who, without her dedication and support, this conference would have never been possible in the first place.
Peter Johnson, PhD. a Rehabilitation Services Speech Mentor with Select Medical gave some excellent suggestions and ideas on speech and swallowing to help those with HD. Pete has a lot of experience in helping people with HD and was very informative especiallywhen he talked about the importance of posture, breathing, oral hygeine and how people with HD can protect themselves when being fed by others!
Jean Miller - [myself] who talked about Juvenile HD and the HDSA National Youth Association.
Then many of these same speakers, along with Pat Newkirk the University of South Florida's Genetic Counselor and Nancy Teton, a social worker with the University of South Florida's Memory Disorder Clinic, participated in Round Table discussions on Saturday afternoon, answering additional questions people may have had.
What made it all really worth while, besides the support everyone received, was when a 15 year old at-risk, who has not wanted to know anything about HD and who, somewhat begrudgingly, attended this conference with his pHD Dad and Mom, told his Mom after Karen Milek gave her presentation on living positively with HD and I gave mine on the National Youth Group....that he WANTS to attend the national convention in June! I can not tell you how this gave several of us chills of joy!
Then there was a lady who ran into Grace Healthcare to drop something off at their receptionist's desk who saw the "Huntington's Disease Conference" sign who stopped and told one of the committee members "Oh, my cousin was just diagnosed with Huntington's Disease. I didn't know there was so much available on it!" She couldn't stay, but Ron not only gave her the conference binder loaded with HD information put armed her with contact numbers, etc.
Later, a friend of one of the committee members who knew absolutely nothing about HD before coming to help out, came up to me afterwards with tears in his eyes saying "Before today I didn't know a thing about Huntington's Disease. I just want you to know that after listening to you and all of the others in this room today, you have a friend in HD who will help in any way I can from now on in getting awareness to this disease."
You can learn more about the list of sponsors, speakers and committee members here: http://clik.to/2004hdconference If you attended this conference, please take a few minutes to send each of them a big "Thank You" note to let them know how important it is for you to have information like this made available to you and how much you appreciated their support!
Oh, sometime Friday Karen Karle told the committee members......"this is
just the beginning!" She has been approached by a university who wants us
to put on another Huntington's Disease Conference in Florida where Continuing Education {CE} credits can be earned by any professionals or
students attending and for the families living with HD! So stay tuned for
the 2nd annual Florida Huntington's Disease Conference sometime later this year or early in 2005!
Thank you everyone for your support!
Posted by Dave at 08:11 PM | Comments (0) | TrackBack
February 05, 2004
A Giant Leap Forward
FuturePundit comes through with a great article on a fantastic development in genetic research. Scientists have come up with a new technique that allows them to study thousands of genes at once to determine if they are involved in a cell function.
This technique builds on the discovery of RNAi and will have a huge effect on future research. This could have a profound effect on the future of Huntington's Disease research. Here's an excerpt:
"With this high-throughput technology, however, we can study the function of a complete set of genes. We can systematically identify all the genes involving one process.”
"The technique can be used to screen for genes involved in intercellular communication, cancer cell proliferation, and other cellular activity. Combined with drug screening the technique can accelerate the search for drugs that operate on particular cellular pathways and processes."
"...However, it would be possible to perform coordinated screens — one for compounds that interfere with a target pathway and an RNA interference screen for genes that act in that pathway. This correlation would allow you to match the compounds with the proteins they affect in a much more useful way"
"...makes possible the faster rate of discoveries of disease causes and disease treatments. Cells are so complex with so many pieces, subsystems, and types of interactions that only with the development of massively parallel techniques can we hope to fully figure out how cells work and how to cure most diseases in the next few decades."
Folks...finding a treatment for Huntington's Disease involves understanding its effects on "cellular pathways and processes". This technique will also allow researchers to better identify what drugs are more effective. This is a big time saver.
Huge gains are being made...keep the faith!
Posted by Dave at 08:21 PM | 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
Person Of The Year
WESH, Orlando's Channel 2, has a nice piece on Karen Milek. She is HDSA's 2003 Person of the Year.
It's great to see someone who has done so much get recognized in their own community. Here's a bit from the article:
"My one wish is that we could come up with a pill that people with Huntington's disease could take, some kind of little cocktail, it will just slow it down, so they just die of old age and not Huntington's," Milek said.
Milek also tested positive for the disease and knows that awareness and research can lead to a cure.
"I found out about eight years ago, and it was the best and the worst day," Milek said.
Posted by Dave at 06:38 PM | Comments (0) | TrackBack
February 03, 2004
Lieberman Drops Out
One of the best candidates, in terms of health care issues that affect the Huntington's Disease community, has decided to drop out of the race.
It's looking like Kerry is going to be Democratic Nominee.
Posted by Dave at 07:17 PM | Comments (0) | TrackBack
Carol Carr To Be Paroled
From the Atlanta Journal-Constitution:
A woman convicted in the mercy killing of her two ill sons will be released from prison in March after serving 21 months of a five-year prison sentence, the state Board of Pardons and Paroles announced today.
Carol Carr shot and killed Randy and Andy Carr in a nursing home bed in Griffin on June 8, 2002. The men suffered from advanced stages of Huntington's Disease.
Carr, 65, will be released one month after her earliest possible release date under Georgia law, said Heather Hedrick, spokeswoman for the parole board. Carr, who is being held in Metro State Prison in Atlanta, was interviewed by parole board member Mike Light in January.
"Carol Carr has punished herself more than the prison system will ever be able to punish her," Light said in a statement.
You can read the whole thing here.
Posted by Dave at 03:15 PM | Comments (1) | TrackBack
February 02, 2004
Amarin Sold
A few days ago I wrote a piece about Amarin and a sudden spike in the stock price. Well...we now now what was going on. Amarin Pharmaceuticals has been sold to Valeant Pharmaceuticals International. It's not a done deal yet, but everybody will want the sale to go through.
What this means for LAX-101, the upcoming HD drug, is uncertain...but it is almost certainly better that the company was sold rather than go into bankruptcy.
Amarin Corporation Announces Letter of Intent to Sell Certain Assets to Valeant Pharmaceuticals International
Monday February 2, 10:47 am ET
LONDON, February 2 -- Transaction is subject to definitive documentation, approvals and consents
Amarin Corporation plc (NASDAQ: AMRN - News) today announced that it has entered into a letter of intent for the sale of certain of its assets, including Amarin Pharmaceuticals Inc and the majority of Amarin's marketed and development product portfolio, to Valeant Pharmaceuticals International (Valeant) (NYSE: VRX - News). Completion of the transaction remains subject to a number of contingencies, including entering into a definitive agreement, final approval by the parties' boards of directors and the consents of any necessary third parties. Amarin and Valeant have received early termination of the waiting period under the Hart-Scott-Rodino Antitrust Improvements Act. Further details and financial terms are not being announced at this time, pending definitive agreements.
"We are very pleased to have entered into this nonbinding letter of intent with Valeant, a world-class pharmaceutical company, and are working actively with Valeant to document an agreement" said Rick Stewart, chief executive officer of Amarin. "While receiving early termination of the HSR waiting period satisfies one contingency, we cannot assure that a transaction will be completed. We look forward to providing updates as the transaction progresses" concluded Mr. Stewart.
Amarin has previously announced that it is actively engaged in efforts to sell assets in order to satisfy its obligations, and has recently restructured and extended its outstanding debt to Elan Corporation, plc to provide for an extension to not later than March 31, 2004 for that payment. Amarin has retained SG Cowen, investment bankers, as its advisors in the divestiture.
Amarin Corporation, plc is a specialty pharmaceutical company focused on neurology. Amarin has nine pharmaceutical products on the US market along with a development pipeline that includes two late-stage candidates: Zelapar(TM) (selegiline orally disintegrating tablets), for Parkinson's disease, and LAX-101, a proprietary compound for Huntington's Disease.
For press releases and other corporate information, visit our website at http://www.amarincorp.com.
Statements in this press release that are not historical facts are forward-looking statements that involve risks and uncertainties which may cause the Company's actual results in future periods to be materially different from any performance suggested herein. Such risks and uncertainties include, without limitation, the uncertainty of entering into and consummating a definitive agreement on terms acceptable to the parties, the inherent uncertainty of pharmaceutical research, product development and commercialisation, the impact of competitive products and patents, as well as other risks and uncertainties detailed from time to time in periodic reports. For more information, please refer to Amarin Corporation's Annual Report for 2002 on Form 20-F and its Form 6-Ks as filed with the U.S. Securities and Exchange Commission. The company assumes no obligation to update information on its expectations.
Posted by Dave at 03:02 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