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Final Say: One Patient's Ordeal 

Abdul Hakim Al-Warith, pictured with his wife, Julie E. Rones, died as he waited for a liver transplant. (Family photo) Abdul Hakim Al-Warith and his wife.
By David S. Hilzenrath 
Washington Post Staff Writer 
Wednesday, June 24 1998; Page A01 

Diagnosed with liver cancer, Abdul Hakim Al-Warith of McLean wrote a polite but worried letter to his HMO in February 1997 asking it to reverse its position and approve the potentially life-saving liver transplant recommended by specialists at Johns Hopkins University. 

"Please contact me and apprise me of the status of matters, as any further delay in my treatment will have critical consequences," wrote the 52-year-old banking consultant and father of five. 

One month later, Al-Warith again wrote to Kaiser Permanente, his tone more urgent. The HMO's unresponsiveness "is causing considerable mental and emotional stress," he said. 

In April, Al-Warith poured his exasperation into a third letter. "[M]y feeling is that Kaiser is stalling on a decision." 

Finally, in May, Al-Warith appealed to the agency that oversees health benefits for the families of federal and some District employees. The agency took five days to review his case and told the HMO to pay for a transplant. But by the time an organ became available, Al-Warith was too sick for the operation. He died the next day. 

For people who are already in a vulnerable position, challenging a health plan's decisions on medical treatment can be a frustrating and lengthy ordeal, especially because the plan typically has the final say. Congress is considering ways to tighten controls on HMOs, and one of the most contentious proposals is to guarantee patients the ability to appeal an HMO's decision to an independent authority. 

Unlike Al-Warith, people with private insurance generally lack that option. The federal government is working to provide external appeals for people in Medicare and Medicaid, the government insurance programs for the elderly, poor and disabled, and 18 states have required insurers to provide external appeals that vary in their scope and degree of independence. 

President Clinton has proposed establishing an independent appeals process for all consumers, as a patient's basic right. 

Some elements of the health insurance industry have resisted legislative mandates, and others say health plans generally do a good job of handling consumer grievances. 

"An appeals process that works as fast as it needs to is one of the tenets of our own code of conduct," said Susan Pisano, spokeswoman for the American Association of Health Plans, a major industry lobby. 

Patient advocates see it differently. Managed-care companies' procedures for handling disputes are, for the most part, "a mean-spirited joke," complained A.G. Newmyer III, chairman of the Fair Care Foundation, a patient advocacy group in Chevy Chase. "They are structurally designed to take forever, to be as inconvenient as possible, and to achieve the precise result that the insurers want -- that is, to get the policyholders to simply give up." 

Yet, for patients "willing to go the distance . . . the insurers very often cave," Newmyer said. 

Kaiser officials said they recognized the frustration Al-Warith and his wife felt but disagreed with the complaint that Kaiser was unresponsive. 

"I think we were pretty consistent in our answer, but it wasn't the answer they wished to have," said Larry Oates, Kaiser's associate medical director. 

The internal appeals that health plans offer consumers often reward perseverance. 

One patient who triumphed was Rosalie Lynn, who contested her HMO's refusal to pay a $60 podiatric claim. 

After being rebuffed twice by the HMO -- first by the member services department, then by the medical benefit review committee -- Lynn took time off from work as an administrative assistant at the University of Maryland in College Park and drove more than an hour to CareFirst headquarters in Owings Mills, Md., to plead her case before an appeals panel of HMO members. 

The panel decided unanimously in her favor. "It was an easy decision," Chairwoman Teri Harrison said. 

For $60, "most people . . . would have gave up," said Lynn's husband, Charles, who accompanied her to the hearing. 

Few consumers take the formal appeals route. CareFirst and FreeState Health Plan, an affiliated Blue Cross and Blue Shield HMO, processed more than half a million medical claims last year and received only 703 grievances, said Antoinette Hopkins, director of member services for the two HMOs. 

Though health plans may explain their grievance procedures in handbooks sent to enrollees, some consumers say they are not aware of their rights or responsibilities when a dispute arises. 

Sometimes, what is presented as a fair outside appeals process can be far from impartial. That was the California Supreme Court's comment last year on an arbitration system Kaiser Permanente has used to resolve disputes in that state. 

"[T]here is evidence that Kaiser established a self-administered arbitration system in which delay for its own benefit and convenience was an inherent part," the court said in its opinion. 

The court said the appointment of the neutral arbitrator in Northern California malpractice disputes took an average of 674 days in the mid-1980s instead of the promised 60 days or less and that it took almost 2 1/2 years on average for a case to reach a hearing. 

Kaiser has taken steps to improve the arbitration system, and the HMO wasn't necessarily responsible for the delays, Kaiser Vice President Pauline Fox said. 

As a member of Kaiser's HMO in the Washington area, Al-Warith was not subject to the arbitration system. Told he had about a year to live, he challenged his health plan internally -- and then pursued the external appeal available to those covered through the Federal Employees Health Benefits Program. 

Oates, who coordinated Kaiser's review of Al-Warith's case, said the HMO was following sound medical judgment throughout the dispute because Al-Warith's cancer was too advanced for him to receive a new organ. 

In October 1996, after Al-Warith had been diagnosed with liver disease, the director of the liver transplant program at the University of Alabama at Birmingham studied his test results for Kaiser. Applying the university's criteria, the Alabama expert concluded that Al-Warith did not qualify for a transplant because his liver had four lesions. 

Seeking a second opinion, Al-Warith went outside the Kaiser system to Johns Hopkins Hospital in Baltimore, where by late December doctors had concluded that he was indeed a valid transplant candidate. 

Presented with the conflicting opinion from Hopkins, Kaiser began reassessing the issue. 

On May 1, more than 10 weeks after Al-Warith began his anxious correspondence, Oates sent his first written response. 

"Our process at present is to continue to review his [Al-Warith's] care requirements and re-evaluate our decision as necessary. We have not denied his right to pursue care outside of our system," Oates wrote to the patient's lawyer. 

In late April and early May, the HMO got the results of an analysis it had sought from an outside "ombudsman" group. One cancer specialist concluded that a transplant offered "the best hope" of extending Al-Warith's life, Oates said. Another gave "a qualified yes" to the question of whether a transplant "might be beneficial," Oates said. 

Even with the operation, neither consultant gave Al-Warith more than a 20 percent chance of surviving for five years, Oates said. 

With his health -- and his odds of recovery from surgery -- deteriorating, Al-Warith appealed to the U.S. Office of Personnel Management. Covered by his wife's government health benefits, he was able to turn to a higher authority in a way that commercially insured patients generally cannot. Even so, this appeal wasn't as independent as some patient advocates consider necessary, because, like other employers, the OPM could face rising costs if it ordered more care. 

It took the federal agency less than a week to respond. Kaiser "re-evaluated the claim and determined that a liver transplant is appropriate for your medical condition," the OPM informed Al-Warith on May 14. When doubts arose about Kaiser's intentions, the OPM on May 20 formally ordered the HMO to pay. 

By the time Al-Warith was hospitalized at Hopkins on May 25, 1997, his illness was too severe for doctors there to perform a transplant. Kaiser flew Al-Warith to the UCLA Medical Center in Los Angeles, where he died on July 2. 

Al-Warith's insurance struggle continued. Even after his death, a collection agency sent him notices this year for unpaid physician bills. In addition, Hopkins was still owed $18,477.98 as of last week for Al-Warith's hospital stay, according to an account statement, and UCLA was owed more than $100,000, according to lawyer Jacqueline Fox, who represented Al-Warith. 

Kaiser was waiting for an itemized bill from Hopkins and will pay for all the care, a spokeswoman said. 

Whether earlier transplant surgery would have saved Al-Warith's life can't be known. "I think that's a possibility," Oates said. 

But Kaiser had to weigh the odds, because there aren't enough organs for everyone who might benefit, Oates said. Transplant eligibility criteria vary from hospital to hospital, he noted. 

Al-Warith's widow, D.C. government lawyer Julie E. Rones, said one lesson of this saga is that any external appeals process "needs to have teeth" -- the ability to enforce its decisions. 

The Office of Personnel Management has the power to drop health plans from its program, a potentially disruptive step, but OPM officials said it has no lesser means of penalizing health plans. 

For his part, Kaiser's Oates supports the concept of an independent review. 

"In the majority of cases, it'll support our decision-making processes. And, where it does not . . . it's going to give us an opportunity to learn," Oates said. 

Staff researcher Richard Drezen contributed to this report. 

Copyright 1998 The Washington Post Company