Lydia Romero strained to hear her husband’s feeble voice through the phone.

A week earlier, immigration agents had grabbed Julio César Peña from his front yard in Glendale, California. Now, he was in a hospital after suffering a ministroke. He was shackled to the bed by his hand and foot, he told Romero, and agents were in the room, listening to the call. He was scared he would die and wanted his wife there.

“What hospital are you at?” Romero asked.

“I can’t tell you,” he replied.

Viridiana Chabolla, Peña’s attorney, couldn’t get an answer to that question, either. Peña’s deportation officer and the medical contractor at the Adelanto ICE Processing Center refused to tell her. Exasperated, she tried calling a nearby hospital, Providence St. Mary Medical Center.

“They said even if they had a person in ICE custody under their care, they wouldn’t be able to confirm whether he’s there or not, that only ICE can give me the information,” Chabolla said. The hospital confirmed this policy to KFF Health News.

Family members and attorneys for patients hospitalized after being detained by federal immigration officials said they are facing extreme difficulty trying to locate patients, get information about their well-being, and provide them emotional and legal support. They say many hospitals refuse to provide information or allow contact with these patients. Instead, hospitals allow immigration officers to call the shots on how much — if any — contact is allowed, which can deprive patients of their constitutional right to seek legal advice and leave them vulnerable to abuse, attorneys said.

Hospitals say they are trying to protect the safety and privacy of patients, staff, and law enforcement officials, even while hospital employees in Los Angeles, Minneapolis, and Portland, Ore., cities where Immigration and Customs Enforcement has conducted immigration raids, say it’s made their jobs difficult. Hospitals have used what are sometimes called blackout procedures, which can include registering a patient under a pseudonym, removing their name from the hospital directory, or prohibiting staff from even confirming that a patient is in the hospital.

“We’ve heard incidences of this blackout process being used at multiple hospitals across the state, and it’s very concerning,” said Shiu-Ming Cheer, the deputy director of immigrant and racial justice at the California Immigrant Policy Center, an advocacy group.

Some Democratic-led states, including California, Colorado, and Maryland, have enacted legislation that seeks to protect patients from immigration enforcement in hospitals. However, those policies do not address protections for people already in ICE custody.

More Detainees Hospitalized

Peña is among more than 350,000 people arrested by federal immigration authorities since President Donald Trump returned to the White House. As arrests and detentions have climbed, so too have reports of people taken to hospitals by immigration agents because of illness or injury — due to preexisting conditions or problems stemming from their arrest or detention.

ICE has faced criticism for using aggressive and deadly tactics, as well as for reports of mistreatment and inadequate medical care at its facilities. Sen. Adam Schiff (D-Calif.) told reporters at a Jan. 20 news conference outside a detention center he visited in California City that he spoke to a diabetic woman held there who had not received treatment in two months.

While there are no publicly available statistics on the number of people sick or injured in ICE detention, the agency’s news releases point to 32 people who died in immigration custody in 2025. Six more have died this year.

The Department of Homeland Security, which oversees ICE, did not respond to a request for information about its policies or Peña’s case.

According to ICE’s guidelines, people in custody should be given access to a telephone, visits from family and friends, and private consultation with legal counsel. The agency can make administrative decisions, including about visitation, when a patient is in the hospital, but should defer to hospital policies on contacting next of kin when a patient is seriously ill, the guidelines state.

Asked in detail about hospital practices related to patients in immigration custody and whether there are best practices that hospitals should follow, Ben Teicher, a spokesperson for the American Hospital Association, declined to comment.

David Simon, a spokesperson for the California Hospital Association, said that “there are times when hospitals will — at the request of law enforcement — maintain confidentiality of patients’ names and other identifying characteristics.”

Although policies vary, members of the public can typically call a hospital and ask for a patient by name to find out whether they’re there, and often be transferred to the patient’s room, said William Weber, an emergency physician in Minneapolis and medical director for the Medical Justice Alliance, which advocates for the medical needs of people in law enforcement custody. Family members and others authorized by the patient can visit. And medical staff routinely call relatives to let them know a loved one is in the hospital, or to ask for information that could help with their care.

But when a patient is in law enforcement custody, hospitals frequently agree to restrict this kind of information sharing and access, Weber said. The rationale is that these measures prevent unauthorized outsiders from threatening the patient or law enforcement personnel, given that hospitals lack the security infrastructure of a prison or detention center. High-profile patients such as celebrities sometimes also request this type of protection.

Several attorneys and health care providers questioned the need for such restrictions. Immigration detention is civil, not criminal, detention. The Trump administration says it’s focused on arresting and deporting criminals, yet most of those arrested have no criminal conviction, according to data compiled by the Transactional Records Access Clearinghouse and several news outlets.

Taken Outside His Home

According to Peña’s wife, Romero, he has no criminal record. Peña came to the United States from Mexico in sixth grade and has an adult son in the U.S. military. The 43-year-old has terminal kidney disease and survived a heart attack in November. He has trouble walking and is partially blind, his wife said. He was detained Dec. 8 while resting outside after coming home from dialysis treatment.

Initially, Romero was able to find her husband through the ICE Online Detainee Locator System. She visited him at a temporary holding facility in downtown Los Angeles, bringing him his medicines and a sweater. She then saw he’d been moved to the Adelanto detention center. But the locator did not show where he was after he was hospitalized.

When she and other relatives drove to the detention facility to find him, they were turned away, she said. Romero received occasional calls from her husband in the hospital but said they were less than 10 minutes long and took place under ICE surveillance. She wanted to know where he was so she could be at the hospital to hold his hand, make sure he was well cared for, and encourage him to stay strong, she said.

Shackling him and preventing him from seeing his family was unfair and unnecessary, she said.

“He’s weak,” Romero said. “It’s not like he’s going to run away.”

ICE guidelines say contact and visits from family and friends should be allowed “within security and operational constraints.” Detainees have a constitutional right to speak confidentially with an attorney. Weber said immigration authorities should tell attorneys where their clients are and allow them to talk in person or use an unmonitored phone line.

Hospitals, though, fall into a gray area on enforcing these rights, since they are primarily focused on treating medical needs, Weber said. Still, he added, hospitals should ensure their policies align with the law.

Family Denied Access

Numerous immigration attorneys have spent weeks trying to locate clients detained by ICE, with their efforts sometimes thwarted by hospitals.

Nicolas Thompson-Lleras, a Los Angeles attorney who counsels immigrants facing deportation, said two of his clients were registered under aliases at different hospitals in Los Angeles County last year. Initially, the hospitals denied the clients were there and refused to let Thompson-Lleras meet with them, he said. Family members were also denied access, he said.

One of his clients was Bayron Rovidio Marin, a car wash worker injured during a raid in August. Immigration agents surveilled him for over a month at Harbor-UCLA Medical Center, a county-run facility, without charging him.

In November, the Los Angeles County Board of Supervisors voted to curb the use of blackout policies for patients under civil immigration custody at county-run hospitals. In a statement, Arun Patel, the chief patient safety and clinical risk management officer for the Los Angeles County Department of Health Services, said the policies are designed to reduce safety risks for patients, doctors, nurses, and custody officers.

“In some situations, there may be concerns about threats to the patient, attempts to interfere with medical care, unauthorized visitors, or the introduction of contraband,” Patel said. “Our goal is not to restrict care but to allow care to happen safely and without disruption.”

Leaving Patients Vulnerable

Thompson-Lleras said he’s concerned that hospitals are cooperating with federal immigration authorities at the expense of patients and their families and leaving patients vulnerable to abuse.

“It allows people to be treated suboptimally,” Thompson-Lleras said. “It allows people to be treated on abbreviated timelines, without supervision, without family intervention or advocacy. These people are alone, disoriented, being interrogated, at least in Bayron’s case, under pain and influence of medication.”

Such incidents are alarming to hospital workers. In Los Angeles, two health care professionals who asked not to be identified by KFF Health News, out of concern for their livelihoods, said that ICE and hospital administrators, at public and private hospitals, frequently block staff from contacting family members for people in custody, even to find out about their health conditions or what medications they’re on. That violates medical ethics, they said.

Blackout procedures are another concern.

“They help facilitate, whether intentionally or not, the disappearance of patients,” said one worker, a physician for the county’s Department of Health Services and part of a coalition of concerned health workers from across the region.

At Legacy Emanuel Medical Center in Portland, nurses publicly expressed outrage over what they saw as hospital cooperation with ICE and the flouting of patient rights. Legacy Health has sent a cease and desist letter to the nurses’ union, accusing it of making “false or misleading statements.”

“I was really disgusted,” said Blaire Glennon, a nurse who quit her job at the hospital in December. She said numerous patients were brought to the hospital by ICE with serious injuries they sustained while being detained. “I felt like Legacy was doing massive human rights violations.”

Handcuffed While Unconscious

Two days before Christmas, Chabolla, Peña’s attorney, received a call from ICE with the answer she and Romero had been waiting for. Peña was at Victor Valley Global Medical Center, about 10 miles from Adelanto, and about to be released.

Excited, Romero and her family made the two-hour-plus drive from Glendale to the hospital to take him home.

When they got there, they found Peña intubated and unconscious, his arm and leg still handcuffed to the hospital bed. He’d had a severe seizure on Dec. 20, but no one had told his family or legal team, his attorney said.

Tim Lineberger, a spokesperson for Victor Valley Global Medical Center’s parent company, KPC Health, said he could not comment on specific patient cases, because of privacy protections. He said the hospital’s policies on patient information disclosure comply with state and federal law.

Peña was finally cleared to go home on Jan. 5. No court date has been set, and his family is filing a petition to adjust his legal status based on his son’s military service. For now, he still faces deportation proceedings.

The post ‘I Can’t Tell You’: Attorneys, Relatives Struggle To Find Hospitalized ICE Detainees appeared first on Medika Life.

Both short-term and long-term exposure to wildfire smoke and other pollutants like ozone and diesel emissions can cause inflammation in the brain. We believe pollutants in the lungs cause the neurological effects. Previous research has suggested that breathing in particulate matter (PM) causes pulmonary proteolysis, creating fragmented peptides that enter the bloodstream and weaken the blood–brain barrier (BBB).

Climate Central, a non-profit group, says that every person in the US took in more harmful wildfire smoke in 2023 than in any other year since 2006. Studies show that over the last ten years, exposure has grown 27 times in the United States.

Pollutants from wildfire smoke are mixed together, but fine particulate matter (PM2.5) makes up most of it and is a significant health risk. A study of more than 1.2 million people in southern California over the course of ten years found that wildfire smoke raises the chance of dementia more than any other type of air pollution. Researchers indicate that wildfire smoke is more dangerous to brain health than other types of air pollution.

Fine particulate matter (PM2.5) is air pollution from industry, cars, and wildfire smoke. These are very small drops of solid and liquid matter in the air, 30 times smaller than the width of a human hair. The chance of getting dementia was much higher when people were exposed to PM2.5 from wildfire smoke than when people were exposed from other sources of air pollution. Smoke from other sources increases the risk of dementia, but not as much as smoke from wildfires.

Mental Health Consequences

On days with a lot of pollution, more people go to the hospital for depression, suicide attempts, and psychotic episodes. Study after study shows that children whose mothers were exposed to high amounts of particulates while they were pregnant are more likely to have motor and cognitive problems as adults.

One study is one of the first to look at the effects of particulate matter on teens, whose brains are still growing.

Data from 10,000 pre-teens in the Adolescent Brain Cognitive Development Study (ABCD), the largest US child health study, was analyzed. Two of the 21 study sites are at the University of Colorado at Boulder.

Researchers looked at parent questionnaires from four different times over three years and found that for both boys and girls, each extra day of exposure at unsafe levels increased the chance that they would have depression, anxiety, and other “internalizing symptoms” up to a year later.

But wildfire smoke doesn’t only affect the immediate area. While the exact distance depends on the wind and weather, smoke from wildfires can move hundreds of miles. This wide area has an effect on the air quality in places far from the fire, and the effects can last for weeks.

Smoke from wildfires, as previously noted, can have a significant effect on health. Some of the chemicals and small particles in smoke can impact the eyes, nose, and throat, making it hard to breathe, cough, and wheeze. If someone already has a breathing problem, like asthma, these signs can get worse.

How Can You Protect Yourself

It’s important to remember how the air quality is affected by the flames in the area, even if you are miles away. These are some simple things you can do to stay away from smoke and clean the air in your home and car.

1. Spend as much time as possible inside
Do not go outside as much, especially if you are working out when the air quality is poor. Inside is the best place to be when there is smoke. Keep a close eye on local news on the air quality. They often include a color-coded Air Quality Index (AQI) to help you decide how active you should be.

2. Close all the doors and windows
All of your windows and doors should be closed to keep smoke out of your home. Weather stripping or towels can fill in holes under doors and windows if you can. If your whole-house fan or window air conditioner does not have a HEPA filter, do not use them. They can bring smoke inside.

3. Use an air cleaner
If you have an air cleaner, especially one with a HEPA filter, use it to help clean the air inside your home. You might want to use portable air cleaners in the bedrooms and living rooms where you spend the most time. Do not use things that make ozone because it can make the air quality worse.

4. Create a room with clean air
Set aside one room as a “clean air room” if keeping your whole house smoke-free is hard. A HEPA air filter should be set up in a room with few windows and doors. During times of smoke, spend most of your time in this room.

5. Know how to use your air conditioner well
If you have an air conditioner, make sure it is set to bring in air from outside and move it inside. Keep the windows closed and, your car, set your air conditioner to the recycling mode to keep smoke out of your car while you drive.

6. Stay away from things that make indoor pollution worse
When the air quality outside is a concern, it is important to cut down on indoor pollution sources as well. Do not use gas stoves, burn candles, or smoke inside. The air quality inside can get even worse, and these actions can make the environment more dangerous.

7. Put on a mask if you need to.
If you have to go outside, wear a mask to keep out small particles. Wearing N95 respirators or KN95 masks can help protect you from dangerous particles in wildfire smoke. Scarves or masks made of cloth will not keep smoke out.

8. Keep an eye on air quality
You can check the air quality in your area in real time with apps or websites. There is a simple way to tell if the air is safe to breathe with the Air Quality Index (AQI), which helps you plan your day.

9. Drink plenty of water and look after your health
It is important to stay hydrated because wildfire smoke can irritate your lungs and make it harder to breathe. Your lungs and sinuses stay moist when you drink plenty of water. For people who already have conditions like asthma, make sure they have all of their medicines on hand. Also, do not wait to call their doctor if they have trouble breathing or other signs.

We are beginning to suffer through the effects of climate change and wildfires are a result. Living with these conflagrations may mean changes over a long period of time because climate change will be with us for decades, if not longer. Lifestyle changes are mandated if we expect to maintain our health when we need to interact with wildfire-induced pollution.

The post Wildfire Smoke Linked to Dementia, Brain Damage and Body Health, So Beware appeared first on Medika Life.

LOS ANGELES — They distribute GPS devices so they can track their homeless patients. They stock their street kits with glass pipes used to smoke meth, crack, or fentanyl. They keep company credit cards on hand in case a patient needs emergency food or water, or an Uber ride to the doctor.

These doctors, nurses, and social workers are fanning out on the streets of Los Angeles to provide health care and social services to homeless people — foot soldiers of a new business model taking root in communities around California.

Their strategy: Build trust with homeless people to deliver medicine wherever they are — and make money doing it.

“The biggest population of homeless people in this country is here in Southern California,” said Sachin Jain, a former Obama administration health official who is CEO of SCAN Group, which runs a Medicare Advantage insurance plan covering about 300,000 people in California, Arizona, Nevada, Texas, and New Mexico.

“The fastest-growing segment of people experiencing homelessness is actually older adults,” he said. “I said, ‘We’ve got to do something about this.’”

Jain’s organization three years ago created Healthcare in Action, a medical group that sends practitioners onto California’s streets solely to care for homeless people. It has grown rapidly, building operations in 17 communities, including Long Beach, West Hollywood, and San Bernardino County.

Since its launch, Healthcare in Action has cared for about 6,700 homeless patients and managed roughly 77,000 diagnoses, from schizophrenia to diabetes. It has placed about 300 people into permanent or temporary housing.

Street medicine in most of the country is practiced as a charitable endeavor, aimed at serving a challenging patient population failed by traditional medicine, its proponents say. Living transient, chaotic lives, homeless people suffer disproportionately from mental illness, addiction, and chronic disease and often don’t have health insurance — or don’t use it if they do.

That makes designing a business around caring for them a risk, insurance executives and health economists say.

“It’s really innovative and entrepreneurial to take all this energy and grit to try and improve things for a population that is too often ignored,” said Mark Duggan, a professor of economics at Stanford University who specializes in homelessness and Medicaid policy. “Financial incentives matter massively in health care. It’s everything.”

An estimated 181,000 people were homeless in California in 2023 — about 30% of the nation’s total. The number living outside, more than two-thirds of California’s total, increased 6.9% over the previous year.

The state’s leaders, including Democratic Gov. Gavin Newsom, have struggled to make inroads against the mounting public health and political crisis — despite marshaling unprecedented taxpayer resources.

“We have a huge problem on our hands, and we have a lot of health plans and municipalities saying, ‘We need you,’” Jain said.

On the Streets

On a cloudy April morning in Long Beach, Daniel Speller navigated his mobile medical van among the tents and tarps that crowded residential streets, searching for a couple of homeless patients. A physician assistant for Healthcare in Action, Speller said he was particularly worried about the badly infected wounds they developed on their limbs after they used the street drug xylazine, an animal tranquilizer often mixed with fentanyl.

“These wounds are everywhere. It’s really bad,” Speller said. If infections progress, they can require toe, foot, or arm amputations.

“Man, this one is still so deep,” Speller said as he peeled denim pants from the swollen leg of Robert Smith, 66.

After cleaning and wrapping Smith’s leg, Speller asked him if he needed anything else. “I lost my food stamps,” Smith replied.

Within the hour, Speller’s team of social workers and nurses had summoned an Uber to take Smith to a state office, where he received a new CalFresh card.

Speller then turned his medical van onto a side street lined with more tents and cars-turned-shelters. Nick Destry Anderson, 46, was sleeping on the sidewalk and badly in need of wound care.

“I was so scared. I thought I was going to lose my leg before I met them,” Anderson said, grimacing as Speller sprayed his leg with antibiotic mist. “These people saved my life.”

Anderson reported feeling lightheaded, so Speller asked another team member to use the company credit card to get him a cheeseburger and a Sprite.

Many homeless people languish on the streets, so entrenched in mental health crises or addiction that they don’t much care about seeing a doctor or taking their medication. Chronic diseases worsen. Wounds grow infected. People overdose or die from treatable conditions.

Part of street medicine is bandaging infected sores, administering antipsychotic injections, and treating chronic diseases. Street providers often hand out drug paraphernalia such as clean needles and glass pipes to reduce sharing and prevent infections. Perhaps more importantly, these workers build trust.

Getting homeless patients established with primary care doctors and nurses — who visit them on the streets, in parks, or wherever they happen to be — can prevent frequent and expensive emergency room trips and hospitalizations, potentially saving money for insurers and taxpayers, Jain argues. Even though shelter and housing are scarce, Healthcare in Action’s goal is to get patients healthy enough to live stable, independent lives, he said.

But that’s easier said than done. In West Hollywood that week in April, Healthcare in Action clinical coordinator Isabelle Peng found Lisa Vernon, a homeless woman, slumped over in her wheelchair at a busy bus stop. Vernon is a regular at nearby Cedars-Sinai Medical Center, Peng and her colleague David Wong said.

When Peng and Wong attempted to examine her swollen leg, Vernon shouted at them and declined aid. “Antibiotics aren’t going to save my life!” Vernon yelled as a mouse scurried for the potato chip shrapnel at her feet.

They moved on to their next patient, a man they were tracking with a GPS device they sometimes affix to homeless people’s belongings. Use of the devices is voluntary. They work better than cellphones because they less often get taken by law enforcement during encampment sweeps or stolen by thieves.

“Our patients really move around a lot, so this helps us go find them when we have to get them medication or do follow-up care,” Wong said. “We have already developed rapport with these patients, and they want us to see them.”

Growing Revenue

Street medicine teams are in demand, largely because of growing public frustration with homelessness. The city of West Hollywood, for instance, awarded Healthcare in Action a three-year contract that pays $47,000 a month. The nonprofit can also bill Medi-Cal, California’s Medicaid program, which covers low-income people, for its services.

Mari Cantwell, a health care consultant who served as California’s Medicaid director from 2015 until early 2020, said Medicaid reimbursements alone aren’t enough to fund street medicine providers. To remain viable, she said, they need to take creative financial steps, like Healthcare in Action has.

“Medicaid is never going to pay high margins, so you have to think about how to sustain things,” she said.

Healthcare in Action brought in about $2 million in revenue in its first year, $6 million in 2022, and $15.4 million in 2023, according to Michael Plumb, SCAN Group’s chief financial officer.

Healthcare in Action and SCAN’s Medicare Advantage insurance plan generate revenue by serving homeless patients in multiple ways:

• Both are tapping into billions of dollars in Medicaid money that states and the federal government are spending to treat homeless people in the field and to provide new social services like housing and food assistance.
  
  For instance, Healthcare in Action has received $3.8 million from Newsom’s $12 billion Medicaid initiative called CalAIM, which allows it to hire social workers, doctors, and providers for street medicine teams, according to the state.
  
  It also contracts with health insurers, including L.A. Care and Molina Healthcare in Southern California, to identify housing for homeless patients, negotiate with landlords, and provide financial help such as covering security deposits.
• Healthcare in Action collects charitable donations from some hospitals and insurers, including CalOptima in Orange County and its own Medicare Advantage plan, SCAN Health Plan.
• Healthcare in Action partners with cities and hospitals to provide treatment and services. In 2022, it kicked off a contract with Cedars-Sinai to care for patients milling outside the hospital.
• It also enrolls eligible homeless patients into SCAN Health Plan because many low-income, older people qualify for both Medicaid and Medicare coverage. The plan had revenue of $4.9 billion in 2023, up from $3.5 billion in 2021.

“There’s been an incredible market fit, unfortunately,” Jain said. “You can’t walk or drive down a street in Los Angeles, rich or poor, and not run into this problem.”

Jim Withers, who coined the term “street medicine” decades ago and cares for homeless people in Pittsburgh, welcomed the entry of more providers given the enormous need. But he cautioned against a model with financial motives.

“I do worry about the corporatization of street medicine and capitalism invading what we’ve been building, largely as a social justice mission outside of the traditional health care system,” he said. “But nobody owns the streets, and we have to figure out how to play nice together.”

This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation. 

The post A California Medical Group Treats Only Homeless Patients — And Makes Money Doing It appeared first on Medika Life.

Scott Wiener made a startling revelation at a spring legislative committee hearing: “I was in the hospital. I experienced the most intense abdominal pain that I could even imagine.”

The Democratic state senator recalled crawling up the stairs to his landlord’s apartment last July to get a ride to the hospital.

The San Francisco lawmaker also disclosed 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, he said, wasn’t responding to his medication, which led to abscesses in his abdomen and a weeklong stay in the hospital.

Wiener is a youthful, lean 52-year-old who is known around the Capitol as an energetic workaholic. It’s a reputation he has 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, isn’t the type to “personalize these things.”

He opened up after some Republican lawmakers and health insurance lobbyists questioned the cost of one of his 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 if a patient has previously taken the drug — even if it’s at a higher dose than the FDA has approved or in a different form than was previously prescribed.

The clause about drug dosage and form is especially important for patients who have an autoimmune disease, such as Crohn’s, because they sometimes need a higher dose of a medication than the FDA recommends. Or the medicine might work better for them in injectable form than as a pill.

Patients who are denied medicine often go without it while they appeal, a process that health plans say generally takes 30 days. Some patients, however, say it can take months.

Under his bill, if he ever had to contest his health plan’s decisions about his medications, Weiner told his colleagues, “I could get the proper dosage during the appeal so that I wouldn’t have to miss more health committee meetings.”

But Jedd Hampton, legislative affairs director 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 strongly concerned that stripping health plans of the ability to provide clinical oversight and access to certain drugs may cause potentially adverse reactions and real harm to our enrollees,” he said.

The Senate approved Wiener’s bill 39-0 last month. It is awaiting a hearing in the Assembly.

Wiener sat down with KHN senior correspondent Samantha Young to talk about what it’s like to live with Crohn’s disease, his hospital stay, and how that experience informs his 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 I’ve been lucky that, other than last year, I just deal with periodic pain. But last spring, I started getting more symptomatic, and I was hospitalized for one night at the end of June with pain. Then a month later, on a Tuesday night, getting into bed, all of a sudden, the only way to describe it, it was like an electrical storm in my abdomen. The most severe pain I have ever felt.

The hospital did a scan and found multiple 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 reoccurrence in September, and I had to go back to the hospital for four days. But now it got all cleared out, and I’ve been doing great since then. I feel lucky.

It’s never really affected my ability to be a workaholic, my ability to just live my life, travel, vacation. I feel very privileged. There are other people with other autoimmune diseases and Crohn’s who are much more impacted.

Q: How do you monitor your Crohn’s?

After I left the hospital, I began consulting with an infectious disease specialist. I know what to look for, so hopefully this will never happen again. I know I need to go to the hospital if I have an unexplained fever with some pain and I’m testing negative for covid-19. For a lot of people, if you have an unexplained fever for a few days and you just don’t feel well, you let it go. For me, I need to go to the hospital and have a scan done just to make sure I don’t have an infection.

Q: There are so many chronic health conditions that require specialty care and drugs, which can be very expensive. Have you ever had trouble getting coverage for them?

I was always on common generic medicines, but then the two times I had to go on specialty drugs, I’ve had two opposite experiences. The first time, my insurance company said I had to first try and fail the steroid prednisone. Well, anyone who knows anything about prednisone knows that it is a last resort. Prednisone has so many side effects, and long term, it can cause a lot of problems. It was just shocking to me and my doctor that the insurance company said you have to try and fail.

Then, when my doctor went to switch me to what I’m on now, it was approved within 24 hours. It was as easy as could be. So I’ve experienced amazing health plan response and also really challenging response.

Q: What does that tell you as a lawmaker about the way our health care system works?

Sometimes the system works really well, and sometimes it doesn’t. And if you are not the kind of person who can advocate for yourself or you don’t have your primary care physician able to advocate for you, you can really have a bad outcome.

Q: What have you and other lawmakers done to address that?

We do a lot of work around health plan accountability. I’m carrying another bill, SB 858, that would increase fines for health plan violations. During my entire experience last year, with various hospitalizations, my health plan was terrific. Everything was very prompt, and we always had a nurse follow up with me after I left the hospital. But people do fall through the cracks — sometimes mistakes are made in terms of denying coverage.

I’ve supported and co-authored numerous pieces of legislation to lower prescription drug costs. I’m very fortunate that I have excellent health insurance, but a lot of people don’t. I haven’t had copay problems, but there are people who had to pay huge amounts of money just to get medicine because coverage doesn’t kick in until they pay $5,000. It makes me very sensitive to those cost issues. And I was a proud champion and co-author of AB 1400, Assembly member Ash Kalra’s single-payer legislation.

Q: Does your personal life influence the bills you sponsor?

My personal experience certainly influences my perspective on life. My personal experience as a gay man, as a patient, and in the community in general. It’s true for any elected official, and that’s why it’s important to have officials with lots of life experience because I think it makes you a better representative.

Q: Your bill came under tough questioning from some Republican lawmakers, but that shifted 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 it got bipartisan support. And I think for some of these issues, there’s really no reason for it to be partisan.

As elected officials, sometimes we’re viewed as caricatures of human beings. We’re human beings who have the same challenges that other people do — challenges parenting or having a sick family member. We’ve had members who have had to deal with difficult family situations or health situations. I think it’s good for the public to know that.

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

The post Lawmaker Takes on Insurance Companies and Gets Personal About His Health appeared first on Medika Life.