Lawmaker takes on insurance companies and gets personal about his health
SACRAMENTO — Scott Wiener made a startling revelation during a spring legislative committee hearing: “I was in the hospital. I felt the most intense abdominal pain I could even imagine.
The Democratic state senator recalled crawling up the stairs from his landlord’s apartment last July to get to the hospital.
The San Francisco lawmaker also revealed to his colleagues on the Senate Health Committee that he had Crohn’s disease, a chronic autoimmune disease that causes inflammation of the digestive tract. His body, he said, was not responding to his medication, leading to abscesses in his abdomen and a week-long stay in hospital.
Wiener is a skinny 52-year-old who is known around the Capitol as an energetic workaholic. It’s a reputation he’s had since his early days as a San Francisco supervisor.
He is known for his progressive proposals on housing affordability, safe injection sites, mental health and sentencing reform. Wiener is also an intensely private lawmaker, who by his own admission is not one to “personalize these things.”
It opened after some Republican lawmakers and health insurance lobbyists questioned the cost of one of its bills during a committee hearing in April. SB 853 would require state-regulated insurance companies to cover a declined prescription while the patient appeals the decision if a patient has already taken the drug – even if it is at a higher dose than FDA-approved or in a form different from that previously prescribed.
The clause on the dosage and form of the drug is particularly important for patients with an autoimmune disease, such as Crohn’s disease, because they sometimes need a higher dose of drug than that recommended by the FDA. Or the drug might work better for them in injectable form than in pill form.
Patients who are denied medication often go without while they appeal, a process that health plans say typically takes 30 days. Some patients, however, say it can take months.
Under his bill, if he ever had to challenge his health plan’s decisions about his medications, Weiner told his colleagues, “I could get the right dosage on the call so I wouldn’t no more missing health committee meetings.
But Jedd Hampton, director of legislative affairs for the California Association of Health Plans, said the bill would give patients “unfettered access to prescription drugs,” which could lead to abuse and addiction. “We are deeply concerned that denying health plans the ability to provide clinical oversight and access certain medications could cause potentially adverse reactions and real harm to our enrollees,” he said. -he declares.
The Senate approved Wiener’s 39-0 bill last month. He awaits an audience at the Assembly.
Wiener sat down with KHN Senior Correspondent Samantha Young to talk about what it’s like to live with Crohn’s disease, her time in the hospital, and how that experience influences her work. The interview has been edited for length and clarity.
Q: How does Crohn’s disease affect your life?
I’ve had it for 33 years and have been lucky, other than the last year, to only deal with periodic pain. But last spring I started having more symptoms and was hospitalized one night in late June with pain. Then a month later, on a Tuesday night, as I got into bed, all of a sudden the only way to describe it was like an electrical storm in my abdomen. The most intense pain I have ever felt.
The hospital did a CT scan and found several abscesses in my abdomen. I was in the intensive care unit for three nights and in the hospital for a week. They had to drain abscesses and I was on heavy antibiotics. I had a recurrence in September and had to return to the hospital for four days. But now it’s all cleared up, and I’ve been fine ever since. I’m feeling lucky.
It never really affected my ability to be a workaholic, my ability to live my life, my travels, my vacations. I feel very privileged. There are other people with other autoimmune diseases and Crohn’s disease who are much more affected.
Q: How do you monitor your Crohn’s disease?
After leaving the hospital, I started seeing an infectious disease specialist. I know what to look for, so hopefully this never happens again. I know I have to go to the hospital if I have an unexplained fever with pain and my covid-19 test is negative. For many people, if you have an unexplained fever for a few days and you don’t feel well, you’ve given up. For me, I have to go to the hospital and get a CT scan just to make sure I don’t have an infection.
Q: There are so many chronic health conditions that require specialized care and medication, which can be very expensive. Have you ever had trouble getting coverage for them?
I was still on common generic drugs, but then the two times I had to take specialty drugs, I had two opposite experiences. The first time my insurance company told me that I had to try and fail the steroid prednisone first. Well, anyone who knows anything about prednisone knows it’s a last resort. Prednisone has so many side effects, and in the long run it can cause a lot of problems. It was just shocking to me and my doctor that the insurance company said try and fail.
Then when my doctor went to switch me to what I’m currently taking, it was approved within 24 hours. It was as simple as possible. So I experienced amazing health plan response and really difficult response.
Q: As a legislator, what does this tell you about how our healthcare system works?
Sometimes the system works very well, and sometimes it doesn’t. And if you’re not the kind of person who can stand up for yourself, or if you don’t have your GP who can stand up for you, you can have a really bad outcome.
Q: What have you and other legislators done to address this issue?
We do a lot of work on the liability of health insurance plans. I carry another bill, SB 858, which would increase fines for violations of the health plan. Throughout my experience last year, with various hospitalizations, my health plan was great. Everything was very quick and we always had a nurse who followed me after I left the hospital. But people fall through the cracks – sometimes mistakes are made in terms of being denied coverage.
I have supported and co-drafted numerous bills aimed at reducing prescription drug costs. I’m very lucky to have great health insurance, but a lot of people don’t. I haven’t had any co-payment issues, but there are people who have had to pay huge sums just to get medication because coverage only kicks in when they pay $5,000. This makes me very sensitive to these cost issues. And I was a proud champion and co-author of AB 1400Assembly Member Ash Kalra’s Single Payer Legislation.
Q: Does your personal life influence the invoices you sponsor?
My personal experience certainly influences my outlook on life. My personal experience as a gay man, as a patient and in the community at large. That’s true for any elected official, and that’s why it’s important to have elected officials with a lot of life experience because I think that makes you a better representative.
Q: Your bill has been the subject of tough questions from some Republican lawmakers, but that changed after you shared your story. Do you think personal stories like yours carry weight with your colleagues and the public?
Yeah. I was really grateful that he got bipartisan support. And I think for some of these issues, there’s really no reason for it to be partisan.
As elected officials, we are sometimes perceived as caricatures of human beings. We are human beings who have the same challenges as other people—challenges of being parents or having a sick family member. We have had members who have had to deal with difficult family situations or health issues. I think it’s good for the public to know that.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Along with policy analysis and polling, KHN is one of the three main operating programs of KFF (Kaiser Family Foundation). KFF is an endowed non-profit organization providing information on health issues to the nation.
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