A retired San Francisco firefighter, who spent nearly two decades willingly putting his life on the line for others, now finds himself fighting for survival while in a battle against his own insurance company.

“You just automatically depend on that insurance being there,” said an emotional Ken Jones, who retired in 2012 after working for the San Francisco fire department for 17 years.  “I expected to be taken care of.”

Jones, 71, was diagnosed with metastatic lung cancer last year, which has left him with painful tumors growing in his bones, lymph nodes, and brain. Jones’ doctor believes the stage 4 cancer is linked to Jones’ time on the front lines as a firefighter.

Ongoing exposure to smoke and other chemicals pose such a danger, the World Health Organization, beginning in 2022, started classifying firefighting as a “carcinogen.”

The first denial letter

Part of Jones’ medical treatment, which was prescribed by his oncologist, was recently denied by his insurance company.

“It’s been horrible, said Helen Horvath, Jones’ wife. “It has been a huge burden.”

The couple met as young firefighters in San Francisco and have been married for close to 25 years.

Blue Shield deemed firefighter ineligible for immunotherapy

Blue Shield of California, which administers Jones’ Medicare Advantage plan, declined NBC Bay Area’s interview request. 

In a denial letter to Jones, Blue Shield acknowledged the immunotherapy prescribed by Jones’ doctor is FDA approved and abides by Medicare guidelines, but only when it is used early as a “first-line therapy” following a cancer diagnosis.  A Blue Shield oncologist and an independent reviewer, paid by Medicare, determined Jones is ineligible because he already underwent other types of treatments for his cancer.

“Sometimes though, there’s gray area in medicine,” said Dr. Matthew Gubens, an oncologist treating Jones.  “There are gray areas and edge cases among our patients where those guidelines just don’t apply, where the data aren’t as robust, and we have to make clinical decisions in the clinic on the ground.”

Gubens, who heads UC San Francisco’s Thoracic Medical Oncology Clinic, says he is quite familiar with medical guidelines as someone who helped craft them. Gubens serves on an elite panel with the National Comprehensive Cancer Network, a self-described “not-for-profit alliance of 33 leading cancer centers.”  Its guidelines for how to best treat cancer patients are widely used globally by hospitals, doctors, and insurance companies.

Oncologist blames denial on “misinterpretation” of medical guidelines

Gubens says his request for immunotherapy should be considered a continuation of Jones’ initial treatment, since it was never completed. Jones started chemo and immunotherapy last  year, but his doctors urged him to stop ahead of schedule in order to try new medical trials. 

“His first-line medication was interrupted,” said Horvath, who is also a registered nurse. “They thought he had a better chance with the clinical trial medication.”

The experimental drugs, however, were unable to halt the cancer’s progression as much as everyone had hoped. As a result, Jones’ medical team decided to turn back to chemo combined with immunotherapy.  Then, came Blue Shield’s rejection.

The ‘appeal’ phone number that led nowhere

Gubens decided to protest the decision by calling the designated “appeal” phone number listed on Blue Shield’s denial letter.  After spending hours on the telephone, however, he says he was never able to connect with the appropriate person.

“I reached people who apologized, but they weren’t the right place to send the appeal to, and often referred me back to the first person I talked to,” Gubens told the Investigative Unit.  “That day, I spent about three hours calling different phone numbers for this insurance company.”

Blue Shield would not comment on why the phone number listed on its denial letter did not lead to the correct person. 

Gubens, ultimately, submitted his appeal in writing to Blue Shield but it was denied.

“It’s very clear what the insurance company is doing,” Horvath said.  “They’re trying to limit their costs, and they are doing that by interpreting Medicare rules in a very strict and impersonal way.”

In a statement, Blue Shield said its “medical reviews follow clinical guidelines and are not based on cost.” A spokesperson for the insurer also wrote, “our hearts go out to individuals and their families who are facing a cancer diagnosis or navigating treatment.”

“Who says ‘no’ to somebody with stage four lung cancer?” said Rachel Jones, Ken Jones’ daughter who is also registered nurse.  She says she initially believed the denial must have been some kind of clerical error.

“I really did,” she said.  “To me saying ‘no’ is saying, ‘I’m okay with you dying.’

San Francisco health oversight board urged to intervene

Last month, Rachel Jones took her disbelief to government officials.

“Today, I’m forced to stand here and beg because an insurance company has decided that profits matter more than the life of a man who spent his career protecting this city,” she said while speaking at a Jan. 8 public meeting for the city’s health oversight board.

As Ken Jones sat masked in the back row, lines of people urged the Health Service Board to intervene since it contracted with Blue Shield to provide insurance coverage for nearly 30,000 city employees and retirees, including Jones.

Former fire chief blames Blue Shield for ‘hastening’ firefighter’s death

“They are hastening his death,” Jeanine Nicholson said while at the podium, who served roughly five years as San Francisco’s fire chief until she retired in late 2024.  “Firefighters, whether active or retired, should never have to beg for their lives.”

When Nicholson was diagnosed with cancer more than a decade ago, she said it was Ken Jones who drove her to her medical appointments for six months.

“He’s the kind of safety net that a lot of different kinds of people can talk to,” said Horvath, Jones’ wife.  “He’s able to talk to everybody.”

Mayor Lurie weighs into insurance debate

That may help explain why so many firefighters decided to rally in his honor last month on the steps of City Hall.  While Jones was too sick to show up, his family, friends, and even the mayor did all the talking for him.

“We got to make sure we take care of you,” Mayor Daniel Lurie told the crowd of firefighters during the Jan. 16 rally.  “We as a city have to look out for each other.”

Blue Shield ultimately approved an alternative treatment for Jones that included chemo but not immunotherapy.  Gubens said his patient needs both.

“We are losing ground,” he said.  “Any of our cancer treatments are harder to give and less effective, the weaker a patient is when we’re seeing them.”

According to Gubens, the appeals process wasted precious time.

“Our system is complex and it’s not easy to navigate,” said Monica Bryant, the co-founder and Chief Mission Officer of Triage Cancer, a nonprofit group that helps educate patients and physicians on the insurance approval and appeals process.

“We’ve been told in the past, dealing with the practical pieces, like health insurance and navigating your rights at work, is sometimes even harder than dealing with the physical aspects of a cancer diagnosis.”

Bryant, a cancer rights attorney who created the organization alongside her sister, grew up seeing the impact of cancer since both her parents were in the medical field focused on cancer research.

“People shouldn’t end up in financial ruin just because an insurance company denies their care,” she said. “If someone does get a denial, they shouldn’t take no for an answer.”

Since 2012, Triage Cancer has provided in-person and online educational events to more than 500,000 people across all 50 states, DC, Guam, Puerto Rico, and Canada.

“We are definitely hearing it from the healthcare professionals that we train that they are spending more and more of their time on prior authorizations and denials.“

Doctors increasingly dealing with denials

Physicians, with the help of their staff, each spend an average of 13 hours a week on the insurance approval process, according to a survey by the American Medical Association.

“If they’re spending more time on paperwork, they’re spending less time with patients,” Bryant said.  “I think we can probably all agree that that’s not the direction we want our healthcare system to go in.”

Advocates say denials and even delays can often force patients to forgo medical care or go into debt trying to pay for it.

About 80 percent of physicians say denials or delays in the insurance process ‘sometimes, often,’ or even ‘always’ lead to patients paying for their own care out of pocket, according to the same American Medical Association survey.

“It’s painful especially because of how unnecessary it is,” said Horvath, Jones’ wife. “The suffering of cancer is part of the human condition, but the suffering from insurance struggles is completely unnecessary pain.”

Ken Jones

Ken Jones

The unbearable cost

An online fundraiser for Ken Jones managed to raise more than $50,000 to get him a round of the immunotherapy his insurance refused to pay for.  However, his doctor says to see lasting progress, Jones would need to repeat the medication every three weeks for up to two years, at a cost of more than $1.7 million dollars – money the family doesn’t have.

But that doesn’t seem to be what worries Jones the most.  He says he is speaking up to continue what he spent his entire career doing – looking out for others while sounding the alarm.

“I hate to see other people having to go through this,” Jones said tearfully.  “You don’t stop just caring about other people just because you’re having a hard time.”

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SEATTLE — The Seattle Children’s Neonatal Intensive Care Unit (NICU) shared photos of an annual tradition that brings joy to families.

The NICU team celebrated each baby’s first Valentine’s Day with special costumes. The precious babies were dressed as a Sweethearts candy box, including a heart-shaped center and a “Love Ya” message.

Some parents posed with their children or helped nurses prepare babies for their photos.

NICU nurse Karman Hayenga created this year’s design.

The youngest sweetheart featured this year is Santiago, who was born on Super Bowl Sunday.

The tradition brings fun to what can be a stressful time for families.