SACRAMENTO, Calif. — Scott Wiener made a startling revelation at a spring legislative committee listening to: “I used to be within the hospital. I skilled essentially the most intense stomach ache that I may even think about.”

The Democratic state senator recalled crawling up the steps to his landlord’s residence final July to get a experience to the hospital.

The San Francisco lawmaker additionally disclosed to his colleagues on the Senate Health Committee that he has Crohn’s disease, a persistent autoimmune situation that causes irritation within the digestive tract. His physique, he mentioned, wasn’t responding to his medicine, which led to abscesses in his stomach and a weeklong keep within the hospital.

Wiener is a youthful, lean 52-year-old who is thought across the Capitol as an brisk workaholic. It’s a popularity he has had since his early days as a San Francisco supervisor.

He’s recognized for his progressive proposals on housing affordability, protected injection websites, psychological well being, and sentencing reform. Wiener can be an intensely personal lawmaker, who, by his personal admission, isn’t the sort to “personalize this stuff.”

He opened up after some Republican lawmakers and medical health insurance lobbyists questioned the price of certainly one of his payments throughout a committee listening to in April. SB 853 would require state-regulated insurance coverage firms to cowl a denied prescription whereas the affected person appeals the choice if a affected person has beforehand taken the drug — even when it’s at the next dose than the FDA has authorized or in a special kind than was beforehand prescribed.

The clause about drug dosage and kind is particularly necessary for sufferers who’ve an autoimmune illness, reminiscent of Crohn’s, as a result of they often want the next dose of a medicine than the FDA recommends. Or the drugs may work higher for them in injectable kind than as a capsule.

Sufferers who’re denied drugs usually go with out it whereas they attraction, a course of that well being plans say typically takes 30 days. Some sufferers, nevertheless, say it will possibly take months.

Below his invoice, if he ever needed to contest his well being plan’s selections about his medicines, Weiner advised his colleagues, “I may get the correct dosage in the course of the attraction in order that I wouldn’t need to miss extra well being committee conferences.”

However Jedd Hampton, legislative affairs director for the California Affiliation of Health Plans, mentioned the invoice would give sufferers “unfettered entry to pharmaceuticals,” which may result in abuse and habit. “We’re strongly involved that stripping well being plans of the power to offer scientific oversight and entry to sure medicine might trigger probably opposed reactions and actual hurt to our enrollees,” he mentioned.

The Senate authorized Wiener’s invoice 39-0 final month. It’s awaiting a listening to within the Meeting.

Wiener sat down with KHN senior correspondent Samantha Younger to speak about what it’s wish to reside with Crohn’s illness, his hospital keep, and how that have informs his work. The interview has been edited for size and readability.

Q: How does Crohn’s illness have an effect on your life?

I’ve had it for 33 years, and I’ve been fortunate that, apart from final 12 months, I simply cope with periodic ache. However final spring, I began getting extra symptomatic, and I used to be hospitalized for one evening on the finish of June with ache. Then a month later, on a Tuesday evening, entering into mattress, impulsively, the one strategy to describe it, it was like {an electrical} storm in my stomach. Essentially the most extreme ache I’ve ever felt.

The hospital did a scan and discovered a number of abscesses in my stomach. I used to be within the intensive care unit for 3 nights and within the hospital for every week. They needed to drain abscesses, and I used to be on heavy antibiotics. I had a reoccurrence in September, and I had to return to the hospital for 4 days. However now it obtained all cleared out, and I’ve been doing nice since then. I really feel fortunate.

It’s by no means actually affected my potential to be a workaholic, my potential to only reside my life, journey, trip. I really feel very privileged. There are different individuals with different autoimmune ailments and Crohn’s who’re far more impacted.

California state Sen. Scott Wiener revealed at a latest Capitol listening to that he has Crohn’s illness and was hospitalized for every week in 2021 after experiencing stomach ache akin to “{an electrical} storm in my stomach.” (Samantha Younger / KHN)

Q: How do you monitor your Crohn’s?

After I left the hospital, I started consulting with an infectious illness specialist. I do know what to search for, so hopefully this can by no means occur once more. I do know I have to go to the hospital if I’ve an unexplained fever with some ache and I’m testing detrimental for covid-19. For lots of people, you probably have an unexplained fever for just a few days and you simply don’t really feel properly, you let it go. For me, I have to go to the hospital and have a scan executed simply to verify I don’t have an an infection.

Q: There are such a lot of persistent well being circumstances that require specialty care and medicine, which could be very costly. Have you ever ever had hassle getting protection for them?

I used to be at all times on widespread generic medicines, however then the 2 occasions I needed to go on specialty medicine, I’ve had two reverse experiences. The primary time, my insurance coverage firm mentioned I needed to first strive and fail the steroid prednisone. Effectively, anybody who is aware of something about prednisone is aware of that it’s a final resort. Prednisone has so many negative effects, and long run, it will possibly trigger a whole lot of issues. It was simply surprising to me and my physician that the insurance coverage firm mentioned it’s important to strive and fail.

Then, when my physician went to change me to what I’m on now, it was authorized inside 24 hours. It was as simple as may very well be. So I’ve skilled superb well being plan response and additionally actually difficult response.

Q: What does that let you know as a lawmaker about the best way our well being care system works?

Typically the system works rather well, and typically it doesn’t. And if you’re not the sort of one who can advocate for your self otherwise you don’t have your main care doctor capable of advocate for you, you may actually have a foul consequence.

Q: What have you ever and different lawmakers executed to handle that?

We do a whole lot of work round well being plan accountability. I’m carrying one other invoice, SB 858, that will improve fines for well being plan violations. Throughout my complete expertise final 12 months, with varied hospitalizations, my well being plan was terrific. All the things was very immediate, and we at all times had a nurse observe up with me after I left the hospital. However individuals do fall by way of the cracks — typically errors are made by way of denying protection.

I’ve supported and co-authored quite a few items of laws to decrease prescription drug prices. I’m very lucky that I’ve glorious medical health insurance, however lots of people don’t. I haven’t had copay issues, however there are individuals who needed to pay large quantities of cash simply to get drugs as a result of protection doesn’t kick in till they pay $5,000. It makes me very delicate to these value points. And I used to be a proud champion and co-author of AB 1400, Meeting member Ash Kalra’s single-payer laws.

Q: Does your private life affect the payments you sponsor?

My private expertise definitely influences my perspective on life. My private expertise as a homosexual man, as a affected person, and locally generally. It’s true for any elected official, and that’s why it’s necessary to have officers with plenty of life expertise as a result of I believe it makes you a greater consultant.

Q: Your invoice got here beneath powerful questioning from some Republican lawmakers, however that shifted after you shared your story. Do you suppose private tales like yours carry weight along with your colleagues and the general public?

Yeah. I used to be actually grateful that it obtained bipartisan assist. And I believe for a few of these points, there’s actually no cause for it to be partisan.

As elected officers, typically we’re seen as caricatures of human beings. We’re human beings who’ve the identical challenges that different individuals do — challenges parenting or having a sick member of the family. We’ve had members who’ve needed to cope with troublesome household conditions or well being conditions. I believe it’s good for the general public to know that.

This story was produced by KHN, which publishes California Healthline, an editorially unbiased service of the California Health Care Foundation.

Samantha Younger: [email protected], @youngsamantha