There’s no cure yet for Parkinson’s, and even diagnosing the disease remains a challenge. Yet Ted Thompson remains confident that the best is yet to come for people who have the neurological disorder, thanks to relentless efforts to find innovative ways to treat, diagnose — and eventually cure — the disease.
Parkinson’s disease is the second most common neurodegenerative disorder after Alzheimer’s, but it’s also a very elusive disease. As of yet, there’s no cure — or even a way to halt the progression of the debilitating disorder. Even diagnosis remains a challenge, with somewhere between 500,000 and 1.5 million Americans estimated to be living with Parkinson’s.
But such challenges haven’t stopped a determined movement of grassroots advocacy groups, researchers, clinicians and caregivers to work relentlessly to find innovative diagnostic and treatment methods, as well as an eventual cure. For groups like the Parkinson’s Action Network (PAN), the month of April — which boasts not just Parkinson’s Awareness Month, but also World Parkinson’s Day — offers an opportunity to raise public awareness about the disease.
“Every day, people with Parkinson’s and their families carry the burden of this disease,” says Ted Thompson, CEO of PAN, which acts as the unified voice for the Parkinson’s community on federal public policy issues. “PAN exists to give those people a voice and to empower them to tell policy makers how they can improve their lives now by accelerating treatments and moving us closer to the ultimate goal: a cure for Parkinson’s disease.”
Thompson says he’s “confident that the best is yet to come for people with Parkinson’s disease.” In an interview, he explains how his group is focused on building support for much-needed research into developing next-generation diagnosis and treatment tools and supporting policies that improve the quality of life for people with Parkinson’s.
What does World Parkinson’s Day mean to you? How is it shedding light on the disease?
Every day, people with Parkinson’s and their families carry the burden of this disease. It impacts their health and their lives in big, broad ways. The Parkinson’s Action Network (PAN) exists to give them a voice and to empower them to tell policy makers how they can improve their lives now by accelerating treatments and moving us closer to the ultimate goal: a cure for Parkinson’s disease.
And policy makers are playing a huge role in finding this cure. Major federal agencies like the National Institutes of Health (NIH) and the Department of Defense (DoD) devote millions of dollars in funding to Parkinson’s research and programming, despite serious cuts to the overall federal budget. We are working closely with Congress and the Center for Medicare and Medicaid Services to help improve the quality of life for people with Parkinson’s and ensure that patients on Medicare have access to critical services, such as physical, occupational, and speech-language therapy. Current caps on these therapy services should be removed and we continue to work with others in the community to drive awareness for this issue.
While we work closely with Congress and the Administration on issues like this year round, World Parkinson’s Day and Parkinson’s Awareness Month are excellent times for the community to raise awareness of the disease, the people who are affected by it, and what we can do to get us closer to better treatments and a cure.
What are the challenges in diagnosing Parkinson’s disease?
Unfortunately, there is no test for Parkinson’s disease and we know from our work with the community how difficult it is for someone to receive a definitive Parkinson’s disease diagnosis. Part of our work fighting for robust funding for NIH, DoD and the Food and Drug Administration (FDA) is to ensure that these important federal government agencies can work to bring better diagnostic tools and treatments to market.
Often, a proper diagnosis for Parkinson’s disease only happens when people positively react to certain Parkinson’s drugs and other disorders are ruled out. The Parkinson’s Disease Foundation provides educational information about what a Parkinson’s disease diagnosis looks like.
However, even with these informational resources, there are few diagnostic and treatment options and currently, Parkinson’s patients lack access to one particular diagnostic adjunct due to ongoing policy issues. PAN has been working to drive awareness of DaTscan (Ioflupane I123 Injection), a radiopharmaceutical that can be used with special imaging equipment to help distinguish potential parkinsonian syndromes from essential tremor. In 2011, the FDA approved DaTscan; however, the Drug Enforcement Agency (DEA) classifies DaTscan as a Scheduled II controlled substance because the active ingredient is a cocaine analogue. This classification obstructs patients’ access to DaTscan, because it may only be used at sites that are licensed to handle Schedule II controlled substances.
DaTscan has been used successfully in more than 30 countries, with no cases of abuse. In Europe, where it is not classified as a controlled substance, it has been used since 2000 in over 450,000 patients. Today, only about 200 sites in the United States are licensed to use DaTscan. If it were descheduled, that number could increase to roughly 5,000, providing better access to this test. The effectiveness of DaTscan as a screening or confirmatory test and for monitoring disease progression or response to therapy has not been established.
PAN has sent letters to the DEA, in both 2011 and 2014, requesting that DaTscan be descheduled, and we continue to engage in this issue to give patients with suspected Parkinsonian syndromes access to this diagnostic tool.
What does the future look like in terms of finding a cure and better treatments?
The future looks bright, and I am confident that the best is yet to come for people with Parkinson’s disease. There have been several promising developments in Parkinson’s research and treatments — from new medications to deep brain stimulation to new apps that will help people monitor and report symptoms.
We are also on the cusp of seeing breakthroughs on the policy end. Data collection is an enormous opportunity. Currently we know how many pets are in American homes, but we don’t know how many people have Parkinson’s disease.
Congress is now considering establishing a data collection system for neurological disorders, including Parkinson’s disease and multiple sclerosis. This database would take data about Parkinson’s disease that is currently available and place it in a central location at the Centers for Disease Control and Prevention. Having a central data collection system will not only give us a more reliable number for how many people in the United States have Parkinson’s disease, but it will also provide researchers a deeper understanding of neurological diseases so we can get better, more targeted treatments faster.
We hope that many more people will join us in this effort by contacting their Members of Congress and asking them to co-sponsor and support the Advancing Research for Neurological Diseases Act of 2015.
PAN is always looking for additional people to sign up for our information and take action with us. Learn more at ParkinsonsAction.org.
DaTscan (Ioflupane I 123 Injection) for Intravenous Use, CII
DaTscan is a radioactive drug that is injected into your bloodstream to help take pictures of areas of the brain using a special camera (called a SPECT). If you are an adult with a movement difficulty that may be a parkinsonian syndrome (PS), your doctor may decide to conduct a SPECT using DaTscan contrast, along with other medical tests, to help decide if your movement difficulties are due to PS or a similar condition known as essential tremor. Some types of PS are Parkinson’s disease, multiple system atrophy, and progressive supranuclear palsy.
You should not take DaTscan if:
You are sensitive to iodine or any of the components of DaTscan; your doctor can help you understand what these ingredients are
DaTscan can cause a reaction. When this occurs, it is usually a skin rash or itching
Before you receive a DaTscan injection, your doctor will give you a medication that will reduce the radioactivity going into your thyroid gland
The most common side effects of DaTscan:
Headache, upset stomach, a sensation of motion, dry mouth, or dizziness has occurred in fewer than one out of every 100 patients
What you should know about taking DaTscan with other medications:
Some drugs may interfere with the DaTscan-enhanced picture. Be sure to tell your doctor what drugs you are taking so that he or she can decide whether you should stop any of them for a period of time before using DaTscan
Always talk to your doctor if you have any questions about SPECT imaging or the use of DaTscan
The risk information provided here is not comprehensive. To learn more about DaTscan, talk with your health care provider or pharmacist. The FDA-approved product labeling can be found at http://us.datscan.com/
Important Risk and Safety Information about DaTscan™ (Ioflupane I 123 Injection) for Healthcare Professionals
INDICATIONS AND USE: DaTscan is a radiopharmaceutical indicated for striatal dopamine transporter visualization using single-photon emission computed tomography (SPECT) brain imaging to assist in the evaluation of adult patients with suspected parkinsonian syndromes (PS). DaTscan may be used to help differentiate essential tremor from tremor due to PS (idiopathic Parkinson’s disease [PD], multiple system atrophy [MSA], and progressive supranuclear palsy [PSP]). DaTscan is an adjunct to other diagnostic evaluations. DaTscan was not designed to distinguish among PD, MSA, and PSP. The effectiveness of DaTscan as a screening or confirmatory test and for monitoring disease progression or response to therapy has not been established. CONTRAINDICATIONS: DaTscan is contraindicated in patients with known hypersensitivity to the active substance, any of the excipients, or iodine. WARNINGS AND PRECAUTIONS — Hypersensitivity Reactions: Hypersensitivity reactions, generally consisting of skin erythema and pruritus, have been reported following DaTscan administration. Thyroid Accumulation: The DaTscan injection may contain up to 6% of free iodide (iodine 123 or I-123). To decrease thyroid accumulation of I-123, block the thyroid gland at least one hour before administration of DaTscan; failure to do so may increase the long-term risk for thyroid neoplasia. ADVERSE REACTIONS: In clinical trials, headache, nausea, vertigo, dry mouth, or dizziness of mild to moderate severity were reported. In postmarketing experience, hypersensitivity reactions and injection-site pain have been reported. DRUG INTERACTIONS: Drugs that bind to the dopamine transporter with high affinity may interfere with the DaTscan image. The impact of dopamine agonists and antagonists on DaTscan imaging results has not been established. SPECIFIC POPULATIONS — Pregnancy: It is unknown whether DaTscan can cause fetal harm or increase the risk of pregnancy loss in pregnant women. DaTscan should be given to pregnant women only if clearly needed. Like all radiopharmaceuticals, DaTscan may cause fetal harm, depending on the stage of fetal development and the magnitude of the radionuclide dose. Radioactive iodine products cross the placenta and can permanently impair fetal thyroid function. Nursing Mothers: It is not known whether DaTscan is excreted into human milk; however, I-123 is excreted into human milk. Because many drugs are excreted into human milk and because of the potential for serious adverse reactions in nursing infants, a decision should be made whether to interrupt nursing after administration of DaTscan or not to administer DaTscan at all. Nursing women may consider interrupting nursing and pump and discard breast milk for six days after DaTscan administration to minimize risks to a nursing infant. Pediatric Use: The safety and efficacy of DaTscan have not been established in pediatric patients. Geriatric Use: There were no differences in responses between the elderly and younger patients that would require a dose adjustment.Renal and Hepatic Impairment: The effect of renal or hepatic impairment on DaTscan imaging has not been established. The kidney excretes DaTscan; patients with severe renal impairment may have increased radiation exposure and altered DaTscan images. DRUG ABUSE AND DEPENDENCE: Ioflupane I 123 Injection is a DEA Schedule II controlled substance. A DEA license is required for handling or administering this controlled substance. OVERDOSAGE: It is unknown whether or not ioflupane is dialyzable. The major risks of overdose relate to increased radiation exposure and long-term risk for neoplasia. In case of radioactivity overdosage, frequent urination and defecation should be encouraged to minimize radiation exposure to the patient. PROCEDURE — Radiation Safety: DaTscan emits radiation and must be handled with safety measures to minimize radiation exposure to clinical personnel and patients.
Prior to DaTscan administration, please read the Full Prescribing Information which can be found at http://us.datscan.com/
Ted Thompson, J.D. is CEO of the Parkinson’s Action Network, a nonprofit organization serving as the unified voice for the Parkinson’s community advocating for better treatments and a cure.