Sacramento, California – Scott Weiner made a startling revelation at a spring legislature committee hearing: “I was in the hospital. I have the most severe abdominal pain I can even imagine. “
The Democratic state senator recalls crawling up the stairs to his landlord’s apartment to go to the hospital last July.
The San Francisco lawmaker also revealed to colleagues in the Senate Health Committee that he has Crohn’s disease, a chronic autoimmune condition that causes inflammation in the digestive tract. He said his body was not responding to his medication, which resulted in an abscess in his stomach and a week in hospital.
Weiner is a young, 52-year-old man known as an enterprising workaholic around the Capitol. This has been a reputation since his first day as a San Francisco supervisor.
He is known for his progressive proposals on housing affordability, safe injection sites, mental health, and sentence reform. Weiner is also an intimately personal lawmaker who, in his own words, is not the type to “personalize these things.”
He opened the door during a committee hearing in April after some Republican lawmakers and health insurance lobbyists questioned the cost of one of his bills. SB 853 state-regulated insurance companies will be required to cover a revoked prescription when the patient appeals against the decision if they have previously taken the drug – even if it is in a dose higher than the FDA approved dose or in a different form than previously prescribed.
The section on dosage and form of medication is especially important for patients who have an autoimmune disease, such as Crohn’s, because they sometimes require higher doses of the drug than recommended by the FDA. Or the drug may work better for them in the form of injections than pills.
Patients who are denied the drug often go without it when they apply, a procedure that is usually called a health plan and takes about 30 days. Some patients, however, say it may take months.
Under his bill, if he had to challenge his health plan decision regarding his medication, Weiner told his colleagues, “I can get the right dose at the time of appeal so I don’t have to miss any more health committee meetings.”
But Jade Hampton, legal director of 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 strongly concerned that the snatching of health plans from clinical supervision and the ability to provide access to certain medications could lead to potential adverse reactions and actual harm to our enlisted persons,” he said.
The Senate approved Winner’s bill 39-0 last month. It is awaiting hearing in the assembly.
Winner sat down with KHN’s senior correspondent Samantha Young to talk about how it is to live with Crohn’s disease, how to stay in the hospital, and how that experience informs 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 I’m lucky that, apart from last year, I’ve only dealt with periodic pain. But last spring, I started to get more noticeable and was hospitalized for one night with pain in late June. Then a month later, on Tuesday night, lying in bed suddenly, the only way to describe it, it was like an electric storm in my stomach. The most severe pain I’ve ever felt.
The hospital did a scan and found multiple abscesses in my stomach. I was in the intensive care unit for three nights and in the hospital for a week. They had to get rid of the abscess, and I was on heavy antibiotics. I had a recurrence in September, and I had to go back to the hospital for four days. But now it’s all clear, and I’ve been doing great work ever since. I’m lucky.
It never affects my ability to be a workaholic, my life, travel, leisure. I feel very privileged. Other people are more affected by other autoimmune diseases and Crohn’s.
Q: How do you monitor your Crohn’s?
After I left the hospital, I started consulting an infectious disease specialist. I know what to look for, so I hope it never happens again. I know I have to go to the hospital if I have an unexplained fever with some pain and I’m having a negative test for Covid-19. For many people, if you have an unexplained fever for a few days and you do not feel well, you give it up. For me, I have to go to the hospital and get a scan so I don’t get an infection.
Q: There are many chronic health conditions that require special care and medication, which can be very expensive. Have you ever had trouble getting coverage for them?
I was always on generic drugs, but then I had to take two different drugs, two different experiences. For the first time, my insurance company said that I should try the steroid prednisone first and then fail. Well, anyone who knows anything about prednisone knows that it is a last resort. Prednisone has many side effects and in the long run, it can cause many problems. It was just a shock to me and my doctor that the insurance company said you should try and fail.
Then, when my doctor went to change what I was doing now, it was approved within 24 hours. It was as simple as it could be. So I have experienced amazing health plan responses and really challenging responses.
Q: What do you as a legislator tell us about the way our healthcare system works?
Sometimes the system works really well, and sometimes it doesn’t. And if you are not a person who can advocate for yourself or your primary care physician is not able to advocate for you, you could have really bad consequences.
Q: What have you and other lawmakers done to address this?
We do a lot of work around health planning accountability. I am carrying another bill, SB 858, which would increase fines for health plan violations. During my entire experience last year, with admissions to various hospitals, my health plan was great. Everything was very fast, and one of our nurses always followed me after I left the hospital. But people get caught up in the cracks – sometimes mistakes are made in denying coverage.
I have supported and co-authored many laws to reduce the cost of prescription drugs. I am very lucky to have excellent health insurance, but many people do not. I didn’t have a copy problem, but there are some people who have to pay huge sums just to get medicine because coverage doesn’t start until they pay $ 5,000. This makes me very sensitive to this cost problem. And I’m a proud champion and co-author of AB 1400, the single-payer law of Assembly member Ash Color.
Q: Does your personal life affect your sponsor bills?
My personal experience certainly influences my outlook on life. My personal experience as a gay man, as a patient and in society in general. This is true for any elected official, and that is why it is important to have an officer with a lot of experience in life because I think it makes you a better representative.
Q: Your bill received tough questions from some Republican lawmakers, but it moved after you shared your story. Do you think personal stories like yours carry weight to your colleagues and the public?
Yes. I am really thankful that it has received bipartisan support. And I think for some of these things, there’s no reason to be biased.
As elected officials, we are sometimes seen as human caricatures. We humans have the same challenges that other people have – competing parenting or being a sick family member. We have members who have had to deal with difficult family situations or health situations. I think it’s good for people to know.
The story was produced by KHN, which publishes the California Healthline, an editorially independent service of the California Health Care Foundation.
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