When Michelle Vogel joined CSI Pharmacy as Vice President for Advocacy and Provider Relations in 2016, one of the first things she did was take owner James Sheets to a support group for myositis patients.
From the very beginning, CSI had been committed to caring for patients, not just filling prescriptions. But until this point, the only interactions the pharmacists, nurses, and staff had with patients was when they provided their infusions.
“He didn’t really know about working with patient communities, so I took him to participate in The Myositis Association support group in Houston,” Michelle says. “That’s when James became dedicated to helping patient communities.”
“I went there to talk about IVIG ,” James says. “I went in there thinking this will be great. I can really help this community learn a lot. But when I heard some of what patients were experiencing, I realized I had so much more to learn. That’s really where my passion for building relationships with the rare disease community came from.”
James and Michelle and some other staff started making a habit of attending support group meetings, not just for myositis, but for myasthenia gravis and other rare diseases that are part of CSI’s patient community.
These support groups are a place where people who live with a rare disease can get together with others who have the same disease. At the meetings, patients and caregivers share their experiences of dealing with the challenges of things like symptoms, treatments, and living with chronic or disabling conditions. When they participate in these gatherings, the CSI staff gain valuable insight into what their patients deal with on a daily basis. It makes a difference in how the pharmacy works with patients.
Knowing more about myositis as a disease, for example, and the sorts of challenges patients face in dealing with it gives CSI much more ammunition in helping them access treatments, most of which are used “off label” and can be very expensive.
“When we’re working to get approvals from insurance companies,” Michelle says, “we’re able to ensure that the patient meets the diagnostic criteria of their individual health insurance plan. There is no reason why these lifesaving therapies should be denied when we can submit it to insurance appropriately.”
Having an advocacy program also supports the physicians who prescribe treatments like immune globulin therapy, infused and injected immune suppressants, and cutting-edge biologic treatments.
In addition to advocating for patient access with insurance providers, Michelle can also help people find copay assistance programs to help cover the expenses insurance doesn’t. There are also some financial assistance programs that can help patients with extraordinary medical expenses. And if a person’s insurance is too restrictive, she can help them choose a plan that works more to their advantage.
And then there are the times when CSI just needs to bend over backwards to get the patient their treatments. Michelle tells a story, for example, of an uninsured patient who had been diagnosed with myasthenia gravis. She had applied for social security disability and was waiting for approval, so she would be eligible for Medicare, but it would be three or four months before her hearing with a judge. Meanwhile, she needed IVIG treatment to live.
Michelle was sure the judge would approve the patient for social security disability, making her eligible for Medicare. She also knew Medicare would cover the treatment retroactively. So, CSI agreed to provide all the patient’s medications while she awaited approval. Michelle even contacted the patient’s physicians to ask if they would waive their fees during that waiting period. (They could always bill Medicare later.) Three months later, the patient was approved, and the physicians and the pharmacy all got paid.
“We had to pay for everything in advance, but in the end it all worked out,” Michelle says. “I don’t know of any other specialty pharmacy that would do that. There’s that trust, that extra step for patients. That’s really what you need, because if you do things right, it all comes back tenfold.”