A New Force for Patient Advocacy

Michelle Winokur
Policy Communications Director
Alliance for Patient Access, a member of the Movement Disorders Policy Coalition

Movement disorders affect millions of people, impacting their mobility, self-sufficiency, and day-to-day lives. Everyday activities such as feeding, dressing, or driving become challenging if not impossible. Symptoms also exact a heavy toll on patients’ social and emotional lives, with many battling mental health conditions.

Consider tardive dyskinesia, associated with prolonged treatment with antipsychotic medications. The condition causes involuntary “grimacing, sticking out the tongue, and smacking the lips,” as the Food and Drug Administration explains. Research has historically produced limited treatment options for movement disorders patients, but several new therapies have now been approved for tardive dyskinesia.

The challenge? Health plan coverage and patient access. Enter the Movement Disorders Policy Coalition.

Overcoming access obstacles requires a concerted effort and a collective voice. The Movement Disorders Policy Coalition offers a platform from which stakeholders, including health care providers and patients, can inform policy impacting patient access to approved therapies and appropriate clinical care. Members includes patient, provider, and physician groups who advocate at the federal, state, and health plan levels for key health reforms. They aim to increase access and personalized care for patients with movement disorders.

To this end, the coalition creates and shares educational materials about the array of conditions that fall under the “movement disorders” umbrella. These materials also call attention to the challenges patients face in accessing therapies. The coalition’s recently released white paper, for example, explains the multi-level impact of movement disorders, most notably the burden of the condition on patients themselves. Living with disease symptoms, treatment side effects, and loss of independence all affect one’s quality of life, especially with advanced age.

Friends and family of these patients provide extensive and uncompensated care, even while they face health problems and expenses of their own. One in five caregivers report physical strain due to caregiving duties and 55 percent feel overwhelmed by the amount of care family members need. And these family caregivers are 2.5 times more likely to live in poverty than the general population. For all of these reasons, access to available therapies are important – and not just for the patient.

Costs – of missed work, job loss, treatment, and other health care expenses – represent another layer of impact for those with movement disorders. For people with tardive dyskinesia, treatment can total over $50,000 annually. Despite breakthrough therapies’ value to patients and their caregivers, health plans frequently balk at their cost. As a result, patients may find access to long-awaited treatments delayed or denied, even when other treatment options are scarce.

Movement Disorders: Impact and Access to Treatment,” a collective effort by the Movement Disorders Policy Coalition’s members, outlines four specific treatment barriers that patients with these conditions face:

  1. Prior authorization, where insurance companies must approve a prescription before a patient can begin treatment, can interfere with timely administration of medications.
  2. Step-therapy, which requires a patient to try a less expensive alternative—and sometimes even an off-label drug—before getting the medication initially prescribed by their physician.
  3. Cost sharing, where patients’ co-pays or co-insurance make some medication simply unaffordable.
  4. Prescribing restrictions, where health plans dictate that only specialists can prescribe certain medications. This may add the time and expense of another doctor’s visit before a patient can get treatment.

Each of these barriers exposes patients to unnecessary risk and challenges the value of the doctor-patient relationship. Individualized treatment plans should be determined by a doctor in coordination with his or her patient, the group’s white paper explains, not by one-size-fits-all health plan policies that are designed to save money.

In addition to developing educational content, the Movement Disorders Policy Coalition is also an avenue to share information and resources from other like-minded groups. For example, a recent report from the Doctor-Patient Rights Project similarly highlights how utilization management tactics such as those listed above have “affected nearly every aspect of health insurance coverage – from prescribed diagnostic tests and medical procedures, to prescription drug benefits and physician reimbursements.” It continues, “in some cases, aggressive application of unnecessary or burdensome protocols has denied patients access to treatments prescribed by their doctors.”

The coalition has also led direct advocacy efforts for policy that will reduce health plans’ interference with patient care. At a time when new treatments bring hope to movement disorders patients and their families, the coalition advocates for sound public policy that prioritizes long-term patient health over short-term cost-cutting.  The group is committed to clearing the way for movement disorder patients to access therapies that alleviate symptoms and improve their quality of life.

To keep up with the latest news from the Movement Disorders Policy Coalition, follow them on twitter.com/movedisorders and facebook.com/movedisorders.

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