By Alan Cassels
There seems to be no end of news reports about promising therapies for Alzheimer’s disease and Parkinson’s disease. With the aging of the population having become one of the more serious and complicated aspects of modern American health care, these typically age-associated conditions are driving a lot of research into new drug and other treatment approaches.
Despite high excitement and hope surrounding the latest treatments, journalists need to report responsibly on these drugs to avoid delivering false hope and ensure their stories are leavened with balanced, quality information. There is always a risk that reporters may too easily accept what drug manufacturers, geriatricians and others tell them about new therapies and not demand to see the research backing up their claims.
Gary Schwitzer, publisher of Healthnewsreview.org has evaluated many stories on Alzheimer’s, a subject he finds particularly important and newsworthy personally because it affects a family member. He cautions that “most of the stories I saw failed to evaluate the evidence, exaggerated benefits and failed to give necessary context and caveats – or the balance of same was sorely out of whack.”
Schwitzer’s site has evaluated many stories on Alzheimer’s and Parkinson’s and any reporter should read the important criteria they use to measure success in a medical news story.
Some facts about the diseases
Parkinson’s disease starts to affect people primarily as they approach late middle-age (60 and older) yet the heaviest burden is among the elderly (75 and older). Current estimates estimate that there are 500,000 to 1,500,000 Americans with the disease, and approximately 60,000 are diagnosed with it annually.
About 5 million Americans have Alzheimer’s disease or a related type of dementia, and these numbers are expected to rise. The cost of caring for Alzheimer’s patients in the United States is estimated to reach about $226 billion in 2015, according to the Alzheimer’s Association.
Treatments for Parkinson’s
There is no cure and most of the approaches are to manage symptoms. Dopamine replacement therapy is the dominant treatment. Levodopa (Sinemet) converts dopamine in the brain and is the gold-standard therapy, although there are many other dopamine antagonists, including Requip (ropinirole) and Mirapex (pramipexole).
Treatments for Alzheimer’s
There are four drugs on the U.S. market approved to treat Alzheimer’s. They include three cholinesterase inhibitors – donepezil (Aricept), rivastigmine (Exelon), and galantamine (Razadyne) – and the drug Namenda (memantine). A review of studies of these drugs suggest that they have limited effectiveness for most patients.
New drugs for Alzheimer’s and Parkinson’s: Is it a new drug story or an old drug-new study story? There are two main types of drug treatment stories concerning these diseases: New drug stories, those that describe results of a study of a new drug; and old drug/new research stories, which look an older drug that has been repurposed and tested for these diseases. Here’s an example of an old drug story evaluated by HealthNewsReviews about cholesterol-lowering statins, and one about a new therapy (gene therapy) in Parkinson’s. The pointers raised by the reviewers make an excellent primer in how to report on new or recycled therapies.
An excellent story by John Fauber of the Milwaukee Journal Sentinel detailed the benefits and risks of deep-brain stimulation treatment for Parkinson’s. Despite some deficiencies pointed out at HealthNewsReview reviewers, it carries an appropriate skeptical tone about a new and exciting development.
Some new therapies include amyloid-targeting drugs for Alzheimer’s. These drugs target levels of amyloid plaque in the brain, although the theory that reducing these levels will improve cognitive function has never been proven. This story in the Boston Globe perpetuates the theory and you can read about that controversy here. Other news drugs include:
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Solanezumab, which has generated some news despite early trials failing to show any positive benefits for the drug. It is being tested in people with “mild” Alzheimer’s.
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Aducanumab, which is designed to slow cognitive decline also by reducing levels of amyloid in the brain.
New Parkinson’s drugs
These new drugs aim to improve upon their predecessors such as being better tolerated or better in relieving symptoms. The Michael J. Fox Foundation, which supports the development of new therapies for the disease, says there are more than 30 compounds in development to treat the disease and its symptoms, including drugs targeting motor and non-motor skills.
Coverage tips
When reporting on new treatments for Alzheimer’s or Parkinson’s, consider these cautions:
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Watch out for animal studies. Drugs for these diseases are often tested first on mice and the applicability of those findings to humans are always unknown.
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Context is important. The field of Alzheimer’s drug discovery is littered with failures. There are promising discoveries but no “silver bullets” with either of these diseases. Diseases of aging affecting cognition and memory are terrible, but it doesn’t help families and patients to be exposed to unnecessary hype around new treatments.
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It is unlikely that a single agent will work to halt or reverse Alzheimer’s or Parkinson’s because their causes are so poorly understood. As well, it is believed that genetics, lifestyle, and other factors influence the course of these diseases.
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Patient groups, such as the Alzheimer’s Association and National Parkinson’s Foundation, receive funding from the pharmaceutical industry and this conflict of interest affects their ability to be unbiased and objective about the value of their funders’ products. Always seek an unbiased, unconnected opinion when the benefits and harms related to drug treatments are being discussed.
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There are many non-drug approaches to treating these diseases. The Alzheimer’s Society in Canada lists a host of strategies that may lower risk of developing dementia. These include exercise, socialization, blood pressure control and other lifestyle modifications.
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The care demands of Alzheimer’s and Parkinson’s patients are often ignored. These diseases are very difficult on patients and for the family members who care for them, and these care needs often are overlooked in stories of the latest treatments.
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“FDA approved” means something substantial. Repurposing old drugs to treat these diseases is a valid activity, but reporters should report accurately the difference between “approved” and “unapproved” uses for drugs. Drugs that “show promise” but are not approved haven’t been through the rigorous approval process at the U.S. Food and Drug Administration. Drugs also are frequently used “off-label,” which exposes patients to unproven, and sometimes unsafe prescribing. Reporters should always state whether a drug is being used for an “approved” indication or is being prescribed “off label.”
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Any drug that has an effect will also have side or adverse effects. These must be researched and reported as part of your story. For example, dopamine agonists used in Parkinson’s can cause compulsive gambling and other impulse control disorders in a surprisingly high number of patients. (Some reports say it may be as many as 25 percent of users may experience a compulsive disorder.)
Further reading
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Informedhealthonline.org has published a good list of non-drug approaches to treating Alzheimer’s.
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The Institute for Quality and Efficiency in Healthcare also has an excellent summary report of non-drug approaches to treat Alzheimer’s.
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The Alzheimer’s Association (based in Chicago) has a nice summary of future drug research in this area.
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The Alzheimer’s disease section at the National Institutes of Aging web site offers this fact sheet on Alzheimer’s medications.
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The National Parkinson’s Foundation recently published a what’s hot book on what they call “breakthrough therapies.”
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Check out 2014 Medicines in Development for Parkinson’s Disease (pdf) from the industry group Pharmaceutical Research and Manufacturers of America.
Alan Cassels (@AKECassels) is a writer and drug policy researcher affiliated with the School of Health Information Sciences at the University of Victoria. The author of “Seeking Sickness: Medical Screening and the Misguided Hunt for Disease” (Greystone, 2012), Cassels welcomes questions from journalists. Contact him at cassels@uvic.ca or 240-361-3120.
