SACRAMENT – Scott Wiener made a startling revelation in a spring hearing of the legislative commission: “I was in the hospital. I experienced the most intense abdominal pain that I could not even imagine ”.
The Democratic state senator recalled crawling up the stairs of his landlord’s apartment last July to make a ride to the hospital.
The San Francisco lawmaker also revealed to his colleagues on the Senate Health Committee that he has Crohn’s disease, a chronic autoimmune condition that causes inflammation in the digestive tract. His body, she said, was not responding to her medications, which led to abscesses in the abdomen and a week of hospitalization.
Wiener is a young and skinny 52-year-old known throughout the Capitol as an energetic workaholic. He is a reputation he has had since his early days as a San Francisco supervisor.
He is known for his progressive proposals on housing accessibility, safe injection sites, mental health and sentence reform. Wiener is also an intensely private legislator, who, by his own admission, is not the type 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 denied prescription while the patient appeals the decision as to whether a patient has previously taken the drug, even if it is at a higher dose than that approved by the FDA or in a form other than that. previously prescribed.
The drug dosage and form clause is especially important for patients who have an autoimmune disease, such as Crohn’s disease, because they sometimes need a higher dose of a drug than is recommended by the FDA. Or the medicine might work better for them in injectable form than as a pill.
Patients who are denied medication often do without it while using it, a process that according to health plans generally takes 30 days. Some patients, however, claim that it can take months.
According to his bill, if he ever had to challenge his health plan decisions about his medications, Weiner told his colleagues, “I could get the correct dosage on appeal so I don’t have to miss multiple health committee meetings. “.
But Jedd Hampton, director of legislative affairs for the California Association of Health Plans, said the bill would give patients “unrestricted access to prescription drugs,” which could lead to abuse and addiction. “We are deeply concerned that depriving health plans of the ability to provide clinical supervision and access to certain drugs could cause potentially adverse reactions and real harm to our subscribers,” he said.
The Senate passed the Wiener 39-0 bill last month. The hearing in the Shareholders’ Meeting is awaited.
Wiener caught up with KHN Senior Correspondent Samantha Young to talk about what it’s like to live with Crohn’s disease, her hospital stay and how that experience affects her work. The interview has been edited for length and clarity.
Q: How does Crohn’s disease affect your life?
I have had it for 33 years and have been lucky that, aside from last year, you only face periodic pain. But last spring, I started getting more symptomatic and was hospitalized for one night in late June for pain. Then a month later, on a Tuesday night, suddenly going to bed, the only way to describe it, was like an electrical storm in my abdomen. The strongest pain I’ve ever experienced.
The hospital did a scan and found multiple abscesses in my abdomen. I was in the ICU for three nights and in the hospital for a week. They had to drain the abscesses and I was on heavy antibiotics. I had a reappearance in September and had to go back to the hospital for four days. But now it’s all been cleared up and I’ve been doing great ever since. I’m feeling lucky.
It never really affected my ability to be a workaholic, my ability to simply live my life, travel, go on vacation. 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 check your Crohn?
After I left the hospital, I started consulting an infectious disease specialist. I know what to look for, so I hope this never happens again. I know I need to go to the hospital if I have an unexplained fever with some pain and I am negative for covid-19. For many people, if you have an unexplained fever for a few days and are not feeling well, forget it. For me, I have to go to the hospital and get a scan just to make sure I don’t have an infection.
Q: There are so many chronic health conditions that require specialist care and medication, that they can be very expensive. Have you ever had a problem getting coverage for them?
I’ve always been on common generic medications, but then the two times I’ve had to take special medications, I’ve had two opposite experiences. The first time, my insurance company said I had to try and fail the prednisone steroid 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 shocking to my doctor and me that the insurance company said you have to try and fail.
Then when my doctor went to switch me on what I’m taking now, it was approved within 24 hours. It was as easy as possible. So I experienced an amazing health plan response and a really challenging response as well.
Q: What does it tell you as a legislator about the way our healthcare system works?
Sometimes the system works really well, sometimes it doesn’t. And if you’re not the kind of person who can stand up for yourself or you don’t have your primary care physician to support you, you can really have a bad outcome.
Q: What have you and other lawmakers done to address this?
We work a lot on the responsibility of the health plan. I’m bringing in another bill, SB 858, which would increase fines for health plan violations. Throughout my experience last year, with various hospitalizations, my health plan has been exceptional. Everything went very quickly and we always had a nurse who followed me after I left the hospital. But people fall through the cracks – mistakes are sometimes made in terms of denying coverage.
I have supported and co-authored numerous pieces of legislation to reduce the costs of prescription drugs. I am very lucky to have excellent health insurance, but many people don’t. I haven’t had any copay issues, but there are people who have had to pay huge sums of money just to get the meds because the coverage doesn’t take effect until they pay $ 5,000. It makes me very sensitive to these cost issues. And I have been a proud supporter and co-author of AB 1400, Assembly Member Ash Kalra’s single payment legislation.
Q: Does your personal life affect the bills you sponsor?
My personal experience certainly influences my outlook on life. My personal experience as a gay, as a patient and in the community at large. It’s true for any elected official, which is why it’s important to have officials with a lot of life experience because I think it makes you a better representative.
Q: Your bill was questioned by some Republican lawmakers, but things changed after you shared your story. Do you think personal stories like yours have a bearing on your peers and the public?
Yes. I was really grateful that he got bipartisan support. And I think for some of these issues, there’s really no reason to be biased.
As elected officials, we are sometimes seen as caricatures of human beings. We are human beings who have the same challenges that other people face: parenting challenges or having a sick family member. We have had members who have faced difficult family or health situations. I think it’s good for the public to know.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism on health issues. Together with Policy Analysis and Polling, KHN is one of the three main operational programs of the KFF (Kaiser Family Foundation). KFF is a gifted nonprofit organization that provides information on health issues to the nation.
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