Advocacy group highlights barriers to care for Parkinson’s patients

Call to action sounded in new Movement Disorders Policy Coalition paper

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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In a new policy paper, the Movement Disorders Policy Coalition — an advocacy group for people living with movement disorders — highlights barriers to care that prevent Parkinson’s disease patients from receiving optimal treatment.

Now, the goal of the umbrella advocacy organization is to bring attention to these findings, and make the healthcare industry more aware of the unmet needs of people with the neurodegenerative disease.

“This report serves as a clarion call to healthcare providers, policymakers and insurance companies,” Josie Cooper, director of the coalition, said in a press release.

“By improving access to treatment and prioritizing patient-centered care, we can improve the quality of life for people living with this challenging condition,” Cooper said.

The policy paper, titled “Parkinson’s Disease — Improving Treatment While Working Toward a Cure,” can be found on the coalition’s website.

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Barriers to care include lack of access to specialists, treatments

Parkinson’s is marked by motor symptoms including tremor, slowed movement, and rigidity, as well as by non-motor symptoms ranging from memory problems to psychosis.

Although there is no cure for Parkinson’s, nor any treatment that can slow the disease’s progression, a wide range of therapies are available to help manage disease symptoms and improve quality of life for patients and their families. Such treatments include medications, physical therapy, and other non-drug interventions,

Still, there remain multiple barriers that prevent patients from accessing newer treatments, or the therapy approaches that may work best for them, according to the paper’s authors.

“Although there are many effective treatments for Parkinson’s disease, they are useful only if patients can access them,” the researchers wrote.

One major barrier to getting optimal care is a lack of access to specialists. According to the paper, Parkinson’s patients who are treated by neurologists or movement disorder specialists tend to live longer and have better clinical outcomes. However, only about half of patients receive care from a specialist.

Other types of specialty care also are frequently not available to patients, according to the researchers, who report that 20% of people with Parkinson’s receive physical therapy, and fewer than 10% receive speech or occupational therapy.

“These alarming numbers suggest that many Parkinson’s disease patients in the United States don’t receive optimal care,” the team wrote.

Although there are many effective treatments for Parkinson’s disease, they are useful only if patients can access them.

Another major barrier to optimal patient care is health plan restrictions, the paper reports. As an example, the researchers point to Nuplazid (pimavanserin), an oral therapy approved in 2016 to treat hallucinations and delusions associated with Parkinson’s.

While Nuplazid has proven effective when used for this indication, the paper suggests that health insurance providers may use cumbersome requirements — such as prior authorization and specialty medication tiers — to steer Parkinson’s patients away from the drug, which as a newer therapy is more expensive.

Instead, patients are given older, cheaper antipsychotic medicines — even though these older drugs lack proven efficacy and some carry notable safety risks.

The third barrier highlighted in the policy paper is coverage delays. When a new treatment is approved, there’s usually a period of at least a few months between when regulatory authorities clear a medication and when patients are actually able to access the therapy through their insurance providers.

But that waiting time has lengthened, according to the coalition, due to new regulations from the organization that oversees Medicare, which is the program that provides health insurance to elderly people in the U.S. The new rules have led to delays expected to last longer than a year for some infusion-based therapies for Parkinson’s.

“Such long delays are unacceptable,” the paper states.

The coalition is calling for new or at least updated policies to address these barriers. Among them are steps to expand access to specialist care, restricting insurers’ ability to prevent patients from accessing effective treatments, and speeding up the time from approval of new drugs to access for patients.

“Addressing barriers such as insurance restrictions and lack of access to movement disorder physicians will help optimize care for people with Parkinson’s disease, who already face daunting challenges in their daily lives,” the researchers conclude.