Parkinson's Disease News

Vermont Health Advocacy Network Launches

New Health Policy Website

www.VermontHealthPolicyMonitor.org

Will Track Health Policy Issues in Montpelier and Washington, D.C.

Montpelier, VT…..The Vermont Health Advocacy Network unveiled a new website that will help Vermonters keep track of important health policy legislation in Montpelier and Washington, D.C.

VermontHealthPolicyMonitor.org will provide up to date information on local and national health policy legislation and its implications for patient care and the practice of medicine in Vermont. The new website was spurred by several legislative developments unfolding in the Vermont Legislature that health advocates say could be harmful to patients.

“The decisions made by our elected officials here in Montpelier or in Washington can have a profound effect on patient access to health care,” said Michael O’Connor, President of the Vermont Chapter of the American Parkinson's Disease Association (APDA). “The goal of our new website is to help Vermont patients and their medical providers learn more about the policies that could adversely affect them. The new website will also provide a forum for patients and providers to share information about issues of importance.”

The Vermont Health Advocacy Network is already showcasing several issues of concern on its new website. Among them are proposals to regulate the use of free prescription drug samples, a measure that would allow pharmacists to substitute generic medicine for the brand name medicine and legislation to create a single payer health care system in Vermont. O’Connor took sharp aim at both the proposed restrictions on prescriptions samples and the ability of pharmacists to substitute generic medicine when a health provider prescribes a brand name medicine.   On the samples issue, the Vermont legislature is considering legislation that would require the disclosure of samples provided to medical offices by pharmaceutical companies, a move many say would discourage doctors from accepting samples. When it comes to allowing pharmacists to substitute generic medicine for the brand name medicine prescribed by doctors, members of the Vermont Health Advocacy Network had a stern warning, calling that measure a “recipe for serious problems.” O’Connor, who was diagnosed with Parkinson’s Disease (PD) at age 44, has direct experience with both the samples issue and therapeutic substitution. “I have personally benefited from samples and know many other Vermonters who rely on them for a host of reasons,” said O’Connor. “Samples enable doctors to find the right medicine and dosage for a patient before committing to one medicine and for those who are uninsured or unable to afford prescriptions, samples provide an important financial benefit.”

O’Connor said that some Parkinson’s Disease patients are reluctant to try medication to treat their illness and the ability of a neurologist to have a patient try a medicine while in the doctor’s office can often encourage otherwise reluctant patients to begin a long term drug therapy. O’Connor also has experienced the ill-effects of being switched from brand medicines to generic medicines.  After being on the Parkinson’s drug Sinemet for 8 years, his insurance company told him they were no longer covering the brand name drug. O’Connor’s neurologist placed him on a generic alternative and after six months on the generic, O’Connor was experiencing muscular pain that he had avoided for 8 years. He eventually realized that the switch to the generic version of (Carbidopa/Levadopa) was causing his pain. When O’Connor sought to return to the brand medication, his doctor informed him that his insurance company was trying to switch him off two other brand medicines also prescribed for a number of years. “I take over 200 pills a week because of my PD plus five shots a day to manage diabetes that developed 3 years later,” said O’Connor. “My medical team knows a lot more about my medication and disease than a pharmacist and I certainly don’t want my health jeopardized because an insurance company is trying to save a few dollars.  Co-payments and the cost for insurance are established by the health care providers, but it is getting to the point where you have to be your own advocate, in order to receive the best available treatment options.”O'Connor is not alone is his opposition to switching patients to generic medicine without the approval of the patient’s doctor.  The Arthritis Foundation of Northern and Southern New England supports the use of generic medicine when medically appropriate but believes that a prescriber’s judgment about what medicine is best for a patient should not be overruled by a pharmacist.

“The prescriber must have the final say over what medicine is best for their patients, not the insurance company and not a pharmacist,” said Steven Evangelista, President and CEO of the Arthritis Foundation of Northern and Southern New England. 

Visitors to VermontHealthPolicyMonitor.org can sign a petition to register their support for the position taken by O’Connor and other members of the Vermont Health Advocacy Forum on samples and therapeutic substitution.

Several bills have been filed in the Vermont legislature to create a single payer health system for Vermont residents. Hearings have been held and the sentiment of lawmakers and patient advocates is decidedly mixed. Many are concerned that a government run, single payer system will actually decrease access to care due to the state limiting funding for the program. Funding limitations could also reduce the quality of care, and ultimately end up costing Vermonter’s more money for less service.

The Vermont Health Advocacy Forum is a group of disease related groups that advocate on behalf of patients. Members of the VHAF include the Vermont Chapter of the American Parkinson's Disease Association, the Arthritis Foundation of Northern and Southern New England, the Asthma and Allergy Foundation of Vermont, the Diabetes Foundation of Vermont and the Epilepsy Foundation of Vermont.

Michael O’Connor’s Story           

Brand Medications Make a Critical Difference for Vermont Parkinson’s Disease Patient

By Michael O’Connor, President of the Vermont Chapter of the American Parkinson’s Disease Association (APDA)

Vermonter Michael O’Connor created a very successful golf course design and consulting business that brought him to significant destinations all over the world. He was living his professional dream and was at the top of his game at the young age of 44. In the midst of his travel and consulting network, Michael noticed the onset of tremors in both hands and his pace while walking seemed to get slower and slower throughout the day. At first he didn’t think much of it but when they persisted, he began to think something was wrong. He saw doctors and neurologists who ordered test after test. Six months later, the diagnosis was confirmed. Parkinson’s Disease (PD) at age 44.

While the diagnosis was devastating news for Michael, a regimen of medicines and extensive physical therapy has helped him manage the disease reasonably well. Thanks to just the right mix of medicines, Michael lived relatively pain free for nearly 8 years. But this delicate balance of medicines that was working so well was tipped upside down when his insurance company stopped covering Sinemet, the brand name drug he had used for years and considered the primary medication prescribed for people with Parkinson’s Disease.

After six months on the generic, O’Connor was experiencing muscular pain for the first time in eight years. He and his doctors couldn’t initially determine the cause for the pain until one day it dawned on Michael’s wife that something else may be going on here, and perhaps the switch from Sinemet to the generic medication was the likely culprit. When O’Connor sought to return to the brand medication originally prescribed, his doctor informed him that his insurance company was now trying to switch him off a couple of other brand medicines he had also taken for years. Ultimately, he received approval to return to the use of Sinemet for his tremors and rigidity and within a month most if not all the pain went completely away.

“I take over 200 pills a week because of my PD plus five shots a day to manage diabetes that developed 3 years later,” said O’Connor. “My medical team knows a lot more about my medication and disease than a pharmacist and I certainly don’t want my health jeopardized because an insurance company is trying to save a few dollars. Co-payments and the cost for insurance are established by the health care providers, yet it is getting to the point where you have to be your own advocate, in order to receive the best available treatment. It really makes you wonder how many other patients with chronic disease are being held to this level of replacement therapy of do not even know that a higher standard and treatment option is readily available.”

© Copyright Vermont Health Policy Monitor 2010. All Rights Reserved