A worrisome abdominal pain drove Jalal Afshar to seek treatment last year at healthcare giant Kaiser Permanente.

The Pasadena resident and Kaiser member had lived for years with a rare condition known as Castleman's disease, which affects the lymph nodes and the body's immune system. But this was the first time he experienced such severe symptoms.

Kaiser granted his request to see a specialist in Arkansas. But it ultimately declined to pay for his treatment there. By June, Afshar said, Kaiser was arranging for hospice care so that he could die at home.

Afshar, 58, refused to accept that. Despite Kaiser's stance, he went back to Arkansas for six months of stem-cell transplants, chemotherapy and other treatments that he says saved his life. Now he owes $2 million for his care and is suing the company in state court for breach of contract and unfair business practices.

"There are other people like me with expensive diseases," he said, "and Kaiser is just giving up on us."

Kaiser disputes his allegations. "We did not give up on him," said company spokesman John Nelson. "Treatment options were made available."

Afshar's fight with Kaiser highlights the growing tension in healthcare over how to eliminate wasteful spending without compromising the care of the sickest, most expensive patients. Under pressure to curb ballooning medical costs and hold down premiums in advance of a massive expansion of health coverage, insurers are increasingly forming smaller networks of physicians and hospitals.

But some experts worry these cost-control measures could go too far.

"You want some rationing of higher-cost care if it's not appropriate," said Glenn Melnick, a USC health-policy professor. "These decisions are becoming an even bigger issue with the movement to more narrow networks."

Overall, Kaiser said it has taken numerous steps to address this issue for its patients. It routinely receives high marks for its performance, and policymakers often hold up the company as a model for how it coordinates care across its network of hospitals and physician offices. It was the only HMO to earn a top four-star rating for providing recommended care in California's recent report card on health plans.

"We have a lot of expertise in house, but there are situations where either something is very rare or the technology is so new or complicated where we just refer the patient out," said Joanne Schottinger, a Kaiser Permanente oncologist and chair of the health plan's Southern California cancer committee. "We make referrals for a second opinion, a complicated transplant or a whole course of care."

She said Kaiser has agreements with several outside medical centers to supplement its care. For instance, it sends patients to City of Hope for bone marrow transplants and uses UCLA Medical Center for kidney transplants. Kaiser said it also expanded its clinical trials so patients have easier access to the latest therapies.

Still, patients have filed 280 complaints against Kaiser related to problems they had reaching a specialist since 2008, according to the California Department of Managed Health Care. That's more than three times as many complaints as the second-highest insurer, Anthem Blue Cross, which had 84 patient grievances for the same period.

Even adjusting for its larger enrollment, Kaiser's rate of complaints was higher than that of its closest rivals on a per-member basis in four of the last five years. Kaiser has about 6.6 million customers in the state.

"The whole premise of managed care is that you're accepting a restricted network, but only on the condition the network is adequate," said Anthony Wright, executive director of Health Access, a consumer advocacy group. "At Kaiser, some feel restricted in getting the care they need."

Jane Cooper, chief executive of Patient Care, a Milwaukee firm that helps insured workers in coverage disputes, said many health plans remain too rigid.

"I don't think access to specialty care for challenging conditions is getting any easier," she said.

Afshar and his wife, Maryam, joined Kaiser's HMO when he took a computer engineering job at the company in 2005 in Pasadena. He left his job there in 2007 but held on to the insurance and paid the premiums.

Afshar said he was first diagnosed with Castleman's disease in 2005. But the symptoms remained mild until early last year when he began having difficulty breathing and felt pain in his abdomen.

Afshar said his doctors at Kaiser told him they had never treated a case of Castleman's disease. Searching for clues about his condition, Afshar stumbled upon Frits van Rhee, a physician and expert on the disease at the University of Arkansas for Medical Sciences in Little Rock.

At Afshar's request, Kaiser gave him a referral to the Arkansas doctor in February 2012. Kaiser even paid for an initial round of medical tests there.

Then Kaiser sent notices saying those claims were paid erroneously, records show, and no additional treatments there would be covered. Van Rhee couldn't be reached for comment.

After the HMO's decision, Afshar sought out care at Kaiser's Los Angeles Medical Center. The doctors there gave him a mix of chemotherapy drugs similar to what the Arkansas hospital used, Afshar said, but Kaiser's treatment didn't improve his condition.

In early June, records show, Kaiser referred Afshar for outside treatment at City of Hope, a leading cancer hospital and medical research center in Duarte. But about a week later Afshar's condition had deteriorated, and Kaiser's doctors said there was nothing more they could do and they canceled the outside referral, according to his lawsuit. Afshar said they sent a chaplain to his hospital room to discuss his plans for dying at home.

"The doctor came in and said, 'It's time for you to go home and have hospice care,'" Afshar said. "I said, 'No, I won't give up that easy.'"

Afshar called Van Rhee and two days later he was back in Arkansas. He returned in January from a six-month hospital stay there, and his disease is largely in check now, though he suffers fatigue and some numbness in his legs. His medical bills are the bigger headache.

For now, the couple said, they are paying $500 a month to the Arkansas hospital and an additional $250 a month to his doctors.

"At some point, somebody will want their money," Afshar said. "We would lose everything. Two million dollars is too much for anyone."

chad.terhune@latimes.com