The Movement Disorders Policy Coalition, a group that advocates for people who have movement disorders, is pushing for people with Parkinson’s to have better access to treatment. The group released a paper this month highlighting barriers that keep those with Parkinson’s disease from getting optimal treatment.
“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.”
There are a few obstacles that stop some people with Parkinson’s disease from receiving access to newer treatments or therapies that may be best for them, the authors wrote.
The lack of access to specialists is one of the major barriers. People who receive treatment from neurologists or movement disorder specialists tend to live longer and have better outcomes; only about half of all people see a specialist.
Only about 20% of people with Parkinson’s disease receive physical therapy, and fewer than 10% get speech or occupational therapy.
“Although there are many effective treatments for Parkinson’s disease, they are useful only if patients can access them,” the researchers wrote. “These alarming numbers suggest that many Parkinson’s disease patients in the United States don’t receive optimal care.”
Healthcare insurance plan restrictions are another obstacle. The authors cited the medication pimavanserin (Nuplazid), which was approved in 2016. Insurers have made it very hard for people with Parkinson’s to get the medication, such as requiring prior authorization and using specialty medication tiers. Instead, patients often get older, less-expensive medicines — some of which aren’t proven effective and may be risky.
Coverage delays are also a barrier, as it can take months for a person to get a new drug after its approval — something the authors say is “unacceptable.”
The coalition wants to see updated policies, or new ones, to solve the problems that lead to the barriers.
“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 wrote.
