HUNTINGTON'S HELP
About 30,000 Americans have a genetic disease called huntington's. There is no FDA approved drug to treat the symptoms. Now, a drug on the fast track to approval may be just what doctors and patients have been waiting for.
 |
Transcript of the story
|
|
Healthy For Life Extra
extra information about the story |
|
For More Information
where to go for help |
Twelve years ago, Sharon and Clarence Weise's lives changed when Sharon learned she had Huntington's disease.
Sharon Weise
Has huntington's disease
"I know I won't get any better, so I just accept what I have got and live with it."
Sharon's father, brother, two nieces and two of her four kids also have the progressive brain disorder. The hallmark sign of the disease is uncontrollable, jerky movements.
Kathleen Shannon, MD
Neurologist
Rush University Medical Center
Chicago, IL
"There is no FDA-approved drug to treat the jerky movements."
Doctor Kathleen Shannon hopes that will change with the promise of this drug --tetrabenazine.
Kathleen Shannon, MD
"You do not want people staying at home because they're embarrassed by their movements when they could be out having a full life."
A recent study shows the drug reduces involuntary movements by 25 percent.
Kathleen Shannon, MD
"The families have been so used to seeing people so jerky that they almost did not recognize, the patients look so different to them when they are on the tetrabenazxine."
Sharon's movements all but stopped on the drug.
Clarence Weise
Sharon's husband
"It was a major difference on her."
But the study's over. Sharon's off the drug, and the movements are back. Not one of the 30 drugs she takes every day help.
Sharon Weise
"I stay positive."
But Clarence's frustration is clear.
Clarence Weise
"It has already been through three generations in this family. It seems like we paid enough penalty."
He hopes getting sharon back on the drug will give her back some of what she lost.
Good news -- in march, the company that makes the drug received an approvable letter from the FDA, which outlined conditions it must meet before obtaining official approval. If patients want to pay out-of-pocket for the drug, they could get it outside the U.S. for about $300 a month.
BACKGROUND: Huntington's disease affects about 30,000 people in the United States. It is a hereditary degenerative disease of the nervous system. It causes progressive changes in thinking and memory as well as mood, emotion, and personality. The hallmark of the disease is involuntary jerky movements. Called chorea, these movements affect nearly everyone with Huntington's disease.
Currently, there is no FDA-approved drug to treat the jerky movements. Kathleen Shannon, M.D., from Rush University Medical Center in Chicago, says, "Traditionally, we have used psychiatric medicines like Haldol -- these are major antipsychotic or antischizophrenia drugs. They suppress the movements by blocking the chemical dopamine ... If you block dopamine, the movements get better." However, these medicines are not well tolerated due to the side effects. Dr. Shannon says patients often feel, "mentally dull ... [and] tired" from these drugs.
AN OLD DRUG: The drug tetrabenazine was originally developed in the 1950's to treat psychosis, but newer, more effective drugs were quickly introduced on the market and tetrabenazine fell by the wayside. However, researchers in the United Kingdom found tetrabenazine was useful in treating the involuntary movements associated with Huntington's disease. It is approved in several European countries as well as Canada for this use. Tetrabenazine does not help all the various symptoms of Huntington's disease, but it seems to be effective in controlling the movements.
A NEW STUDY: In the February (2006) issue of the journal Neurology, researchers reported on new data from a study done on tetrabenazine in the United States. Researchers from the Huntington Study Group led a randomized, controlled trial of 84 patients with the disease. Sixteen sites across the country were involved in the study and results were encouraging. On average, tetrabenazine reduced the involuntary movements in patients with Huntington's disease by 25 percent. Many patients saw an even greater improvement. Dr. Shannon says, "For people who are bothered by the extra jerky movements, it suppresses them quite effectively. The families have been so used to seeing people so jerky that they almost did not recognize [them]. The patients look so different when they are on tetrabenazine."
WHAT'S NEXT? Though it is available in Europe and Canada, the drug is still not approved for use in the United States. That means insurance companies likely won't cover it. Patients are able to get the drug from other countries, but doing so could cost more than $300 a month. The drug also has side effects that were seen in about 25 percent of patients in the study. Patients on the drug must be under close supervision of a doctor who is familiar with the drug and its side effects. The most common side effect was sleepiness, but restlessness, slow movement and depression were also seen in some patients. The drug is currently under FDA review for approval.
Kathleen Shannon, MD
Rush University Medical Center
1725 W. Harrison St.
Ste. 755
Chicago, IL 60612
(312) 563-2900
www.lib.uchicago.edu
Copyright © 2006 Ivanhoe Broadcast News, Inc.
|
|
|
|
REVERSING SCLERODERMA
A risky treatment could be the answer for patients with serious forms of this disease. 
COLONOSCOPY-NOT JUST FOR COLON CANCER
A virtual colonoscopy detects a wide range of diseases outside the colon, which could save lives. June is national Scleroderma Awareness Month!
CLEARER MRI
A new invention helps doctors get clearer images of people who can't lie still.
HELP FOR BLOOD PRESSURE
An investigational device could help patients with this condition stay healthier.
SEEING THE HEART IN 3D
Researchers in the Netherlands are using virtual reality to see the heart like never before.
PANCREATIC CANCER VACCINE
A vaccine increases survival for patients with this deadly form of cancer.
NEW HELP FOR ALCOHOLICS
People who suffer from addiction may have a new option in the form of a pill.
TREATING URINARY INCONTINENCE
A sling helps women with this common problem find relief.
ROBOT REHAB FOR STROKE
A new robot is helping stroke patients recover without a therapist.
STEM CELLS HEAL HEARTS
Donor stem cells may be the answer for patients who suffer a heart attack.
BREATHING WITH EMPHYSEMA
A new, nonsurgical procedure could help patients breathe more easily.
DOPPLER PREDICTS STROKE
The same technology used to forecast a storm is helping doctors understand strokes and migraines.
BETTER BYPASS SURGERY
Cutting-edge technology allows doctors to fix a coronary bypass operation while the patient is still in surgery.
BETTER KIDNEY TRANSPLANT TREATMENT
A new treatment could reduce the risk of rejection within six months of a transplant.
WRAPPING RADIATION AROUND TUMORS
New technology allows doctors to target tumors with better precision.
CUTTING-EDGE SURGERY EDUCATION
Huge monitors and microscopic cameras are making it easier for surgeons to teach residents complicated procedures.
LUNG CANCER VACCINE
A vaccine under study offers hope for some patients who are diagnosed with this deadly cancer.
EASIER COLON CANCER TEST
A blood test may be the future in screening for colon cancer.
STEM CELLS FIGHT LUPUS
Using a patient's own stem cells could provide a cure for this devastating disease.
NEW SINUS RELIEF WITH A BALLOON
A new technique pushes sinus blockages out of the way and results in less pain.
HUNTINGTON'S HELP
A drug already approved in Europe and Canada could offer hope to patients who are plagued by this disease.
INHALED CHEMO
A new twist on standard chemotherapy offers less side effects and better precision.
STRENGTHENING BRITTLE BONES
A drug to treat osteoporosis is helping patients with a disease that weakens their bones.
BIRD FLU: BE PREPARED
Find out what you can do to prepare for the flu that experts think will hit the states in the coming months.
|
Send email to news@wchstv.com for information or comments concerning WCHS-TV Eyewitness News.
