Every morning, Jane would wake up feeling fine. Every afternoon, an intense wave of dizziness would overcome her. She went to a neurologist who diagnosed her with vestibular migraine and sent her home.
But the diagnosis never sat well with Jane. The neurologist she had been working with was dismissive; “You’re a woman in your forties,” he said, “It might be perimenopause.” Jane told me, “That’s the thing a lot of us women hear when we have strange symptoms.”
It was 2013 and Jane was working full-time as a senior policy analyst for a large health care association, traveling a lot. She had worked in public policy and advocacy her entire career, from her first post-grad school job at an education association in DC working on student and school health, to HIV and AIDS work, to her current role analyzing insurance payment and coverage and other health policy issues. A year or so after the incident with the neurologist, she remembers traveling to Washington, DC, for work and catching a cold; no cause for alarm. But the cold never went away. It morphed into a sinus infection, then an ear infection. Her ear was so full of fluid that she couldn’t hear out of it. She went back and forth to her primary care doctor for months, the only relief she’d experience was when he prescribed her a steroid pack.
Months passed. She became weak, lost a lot of weight. She continued to push herself at work, plowing through a busy season, but there would be times when her mysterious illness arrested her: she’d wake up on the floor of her house, having passed out. When her weakness overwhelmed her, she went to the ER. They gave her steroids, which helped, but the doctors never did any labs.
By July 2015, Jane had just finished a big meeting at work that knocked her out. “The skin on my face was on fire; my eyes were swollen shut, and I had trouble walking and taking care of myself.” Alarmed, her primary care doctor ordered labs. Jane’s kidneys were failing, her inflammation numbers had skyrocketed, and she was severely anemic. Finally, her doctor recognized the signs: he knew it was autoimmune. He called the local rheumatologist and, in a stroke of good luck and good connections, the rheumatologist agreed to see Jane the next day after hours. He did the ANCA test; her results were off the charts. It was granulomatosis with polyangiitis (GPA), a type of vasculitis.
Looking back, Jane remembers the stress of that moment. “It was terrible,” she said. “My husband had passed away suddenly a few years before.” She thinks that’s what brought this all on: grief and loss. He was 49, a sudden and unusual aneurysm hit. “Loss like that,” she said, “is the biggest stressor anyone ever experiences. I was going to grief counseling, but my identity and day-to-day living was all messed up.”
When Jane was diagnosed with vasculitis, she took a six week medical leave, but she couldn’t stop working. “I had always worked,” she said. And, now, with her husband gone, she needed to work for the health insurance. After six weeks, she went back – “probably too soon,” she said – and just plugged away. “I didn’t have the bandwidth to make huge decisions,” so she kept going, one foot in front of the other.
By the time she returned to work, her perspective had shifted. Living with a chronic disease and its intense treatment regimen gave her new insight and empathy.
After six months of cyclophosphamide, she started rituximab for maintenance therapy, which was infused at at her rheumatologist’s office in a community hospital. That is, until the hospital’s pharmacist decided the hospital wasn’t making enough money off of her. He overruled the physician’s order and prevented Jane from getting the medication she needed there. Her doctor then sent her to an independent infusion center to get it. She was there for over 12 hours in the February cold; the heat wasn’t working. The nurses didn’t seem trained to give rituximab and the facility didn’t feel safe; she refused to go back. Finally, she attended the VF’s 2017 International Symposium, where she met a local doctor, Amy Archer, MD, who was setting up a vasculitis center at Northwestern. She remembers feeling very sick at that symposium and perplexed by all the roadblocks she was running into with the health care system as a patient. Shifting her care to Dr. Archer lessened some of those roadblocks, but also increased the costs of her care.
She started thinking about health policy in this light, not just from a professional perspective, but a personal one. Why was it so difficult to access the medications she needed? Why was there such cost variability for the same treatment? Why were some area hospitals, only miles away from each other, charging twice as much as others? These pain points as a patient began informing her work in health policy.
More than ever, Jane knew that people living with chronic diseases like vasculitis needed – and deserved – people and organizations influencing public policy on their behalf to ensure access to good care. She was lucky that, when her doctor finally recognized the signs, he referred her to a rheumatologist who was able to see her the next day. But this, she knows, is rare and requires connections. “It’s incredibly hard to see a rheumatologist and get yourself on treatment without waiting,” she said. Rapid treatment is not a luxury, it’s a lifesaver. “If you’re not diagnosed and put on treatment in a timely manner, the disease will cause more damage. My physician and I decided to initially try cyclophosphamide because I could start that therapy immediately. Though rituximab was an option, waiting weeks or months for insurance to approve that treatment would have been risky given my deteriorating health.”
She believes advocacy begins with each of us: “I always encourage patients to advocate for themselves.” She encourages them to educate themselves, to sign up for advocacy alerts from organizations that matter to them and their care. “Just start learning,” she said, adding that the 2023 International Vasculitis Symposium will include a session on the basics of public policy and how it can impact patient care. But it takes more than self-advocates. “Having organizations advocate on behalf of patients is critical,” she said, which is why she’s “encouraged that the VF has decided to take on public policy. There are so many uniquenesses to our vasculitis community, and many became very evident during COVID, which has been especially hard on immunocompromised people. The VF’s involvement is great news!”
Today, Jane is certain that the obstacles people living with vasculitis have to face are an excessive burden that must be addressed. When she was diagnosed a few years after her husband died, “it was overwhelming.” Even with a background in health policy, it was confusing and time-consuming to navigate the healthcare system, and she was doing it on her own. “It was roadblock after roadblock, first getting a diagnosis and then accessing the health services and medications I needed to recover and stay well.” She remembers feeling like she needed a longer medical leave, but she didn’t take it simply because the process was too daunting. “It was great to be employed and have a medical leave benefit that many people don’t have, but the hoops I had to jump through to get that leave were really difficult. It became even more frustrating when the insurer overseeing my short-term disability didn’t know anything about GPA. My physician filled out pages and pages of documentation and the insurance company said, no, that’s not enough. My doctor had to frame my vasculitis as kidney failure just to get me the leave I needed.”
Like many patients who are prescribed biologics or other costly medications, Jane has also experienced ongoing insurance-related hassles and care delays. “If not for the perseverance of myself and my physician,” she said, “my treatment plan would have been driven by my insurer instead of my health care team. And that’s not right.” Jane is confident that the VF can make a difference.
“It can feel easy to give up,” she added. But Jane is determined to use her experience as fuel to support others. She joined the VF’s newly formed Public Policy Committee. Together, all of us can be the advocates every person living with a rare disease deserves.
Author: Ashley Asti