An Exercise in Trust: One MS Patient's Journey

Multiple sclerosis, a debilitating condition that continues to damage the central nervous system even when no new symptoms are present, requires specialty medications to help patients. Beginning treatment early can slow the activity of the disease, and according to the Multiple Sclerosis Association of America, treatment with a long-term, disease-modifying therapy is crucial for most patients. Despite the impact of therapy for this chronic condition, patients often wait an excruciating amount of time – sometimes two weeks or more – to start therapy.

I recently spoke with Gina Horner, one of nearly 1 million Americans with MS, who was diagnosed about seven years ago. “I was diagnosed in January, but I didn’t start on any drugs until March. Those two months were agonizing. My neurologist just kept telling me, ‘You can’t control the progression of your disease.’ It was an enormous exercise in trust.”

Why did it take so long for her to start therapy? Cecelia Byers, PharmD, Surescripts Specialty Pharmacy Clinical Product Manager and licensed pharmacist, told me about the complexities of specialty medications and the role technology can play in getting them to patients like Horner faster.

It’s no wonder specialty treatment often gets delayed. According to Byers, there’s a lot of work that goes on (and on and on) behind the scenes, and the work can be broken out into four areas of focus: Benefit investigation and coordination, financial assistance, data gathering, and patient education.

Specialty pharmacy staff need to investigate the patient’s insurance benefit information and whether prior authorization is needed. They make sure the patient can get copay assistance through the manufacturer if it’s available or, if the patient has Medicare part D, find grants to help with the astronomical copays. (A 30-day supply of a common MS medication can cost up to $70,000 a year.)

On top of all that, the pharmacist pursues clinical information from the provider to even get started filling the prescription, and is coordinating therapy details with the patient. It’s exhausting. It’s time-consuming. It’s confusing for the patient. And it all happens before the medication reaches the patient.

An average day finds 79% of specialty pharmacists seeking additional information from clinicians at least three times, and 39% reach out five times or more.

“No matter where you sit within the care team, whether you’re a prescriber or a specialty pharmacist, you’re always thinking about what more you can do or how it could be done differently,” says Byers. “It can be all-consuming.”

While Horner waited for her therapy to start, she said her symptoms got progressively worse. “My hands didn’t work. I couldn’t feed myself. I wasn’t able to write my name.” She found relief in the second medication prescribed to her.

“Consistent care is important,” she said. “Enough so that I decided staying on my medication was the right choice for me and my family. In order to have a baby I would need to suspend treatment while trying to conceive, and stay off of it for the duration of the pregnancy.”

While women with MS get pregnant and deliver healthy babies all the time, the severity of her symptoms led Horner and her wife to choose adoption. They now have a five-month-old son, Jesse, and Horner doesn’t worry about losing the use of her hands while holding him. For patients like Horner, who require complex and costly specialty medications, Surescripts helps tie together the e-prescription, prior authorization, and patient enrollment information, allowing specialty pharmacists to prioritize caring for and educating patients. Here’s how:

  • Surescripts Specialty Patient Enrollment pulls patient-specific information directly from electronic health records at the time of prescribing.
  • Enrollment and clinical information is auto-populated and automatically sent to the specialty pharmacy without further work by the prescriber, allowing more time with patients
  • Specialty pharmacists receive the clinical and enrollment information in workflow, saving them, prescribers and administrators valuable time otherwise spent on faxes and phone calls.
  • If prior authorization is needed, Surescripts includes that information and pharmacists have the data needed to complete the request.

“Surescripts streamlines efficiencies across the board for specialty pharmacists so they can spend time making the patient experience better,” Byers explained.

MS conditions can worsen by the day, so patients can't afford to play the waiting game. Specialty Patient Enrollment significantly reduces administrative tasks and provides a streamlined workflow by automating the enrollment process and accelerating speed to therapy. Visit our Specialty Medications & Patient Enrollment solution page to learn more.

You may also like

7325-IIA Thumbnail

Survey Says: Specialty Pharmacists Want More Time for Patient Care

Specialty medications treat challenging chronic conditions such as cancer, multiple sclerosis and rheumatoid arthritis. Some specialty medications improve the quality of lives, some save lives. So why are patients waiting an average of four days — and up to 10 — to get their critical prescriptions filled? read more

Prescribing Specialty Medications Should Be Easy. And Now, It Is.

In my work developing new health IT products, I often hear stories about patients who go to the doctor and receive a devastating diagnosis. The story may start out simply enough, with a patient suffering from terrible headaches. But instead of being told they are dehydrated, suffering from a vitamin deficiency, or a lack of sleep, they get the news that they have cancer. read more

Immortality, Immunotherapy and the Future of Cancer

Over the past 300 years—roughly the lifespan of industrial civilization so far—we’ve inched from cancer as a death sentence toward cancer as a manageable, chronic condition. If we can get there, that may be more than enough. Like May, Mukherjee appears to reject immortality and argue in favor of time: “[W]e might as well focus on prolonging life rather than eliminating death,” as he writes near the end of Maladies. To that end, he offers an encouraging aphorism: “Death in old age is inevitable, but death before old age is not.” read more

Intelligence in Action, delivered to your inbox