The times and trials of Dr. Ahmed
A hero to his patients, but Medicare cast him as an outlaw
They come from across the country to the Mission Hill office of Dr. A. Razzaque Ahmed, seeking relief from blistering diseases that leave them with excruciating scalp sores, crumbling mouth tissue, and eyelids that sometimes fuse to eyeballs.
At his Center for Blistering Diseases on a sunny morning, Ahmed, 61, greeted patients anxious to receive the treatment he developed for their afflictions. He debriefed them on their symptoms, in a reassuring tone spiced with the accent of his native India.
“He’s our man,’’ said Margaret Fellela, a patient from Johnston, R.I., who wore large sunglasses to cover the red blotches around her eyes. “If it wasn’t for him, I’d be blind now.’’
Ahmed is a noted authority on two rare skin conditions, pemphigus and pemphigoid, that can lead to blindness, disfigurement, even death, and are often misdiagnosed. Some of his peers question his approach, which relies on a unique drug regimen in the toughest cases. But his patients say it gives them relief no other treatments have delivered. He is their caregiver of last resort. And they can’t imagine life without him.
They may soon have no choice but to try. For there is another side to the story of Dr. Ahmed the healer — Dr. Ahmed the Medicare outlaw.
He pleaded guilty in 2007 to a federal felony of obstructing a criminal investigation into health care offenses, and lost his Medicare billing privileges as a result. He admitted to backdating letters to referring physicians and falsifying medical tests in an effort to get Medicare to pay for treatments that can cost as much as $200,000 per patient.
He says he only did it for his patients, many of whom would otherwise have had no way to pay for the drugs Amhed prescribes.
Federal authorities acknowledge that Ahmed did improve the quality of life for many he treated, but say that he also profited from the improper Medicare coverage, and has repaid $2.9 million in restitution.
On Wednesday, Ahmed is expected to ask a US District judge in Boston to reinstate his Medicare billing privileges. Since about 40 percent of his patients depend on the government insurance, Ahmed’s ability to continue practicing medicine in his chosen specialty hinges on the judge’s decision. It could be the final chapter in a strange Boston medical saga that pits the urgent need to get tough on insurance fraud — especially in a time of soaring health care costs — against the desperation of hundreds of patients.
“This disease overwhelms and overtakes your life,’’ said Elizabeth Long, a patient from Knoxville, Tenn., who has made about 18 trips to Boston over two years because most doctors in her home state were unfamiliar with her condition, or didn’t know how to treat it.
Long became blind in one eye and was losing sight in the other before Ahmed became her doctor. “If it wasn’t for the treatments I get in Boston,’’ she said, “I wouldn’t be able to live a normal life.’’
Ahmed’s long road to prominence, and controversy, began in the central Indian village of Wani, where he was born into a family of esteemed doctors and philanthropists. He earned a medical degree in India before moving to the United States in the mid-1970s at age 22 to further his education.
It was during a fellowship in allergies and immunology at the University of California in Los Angeles that he decided to focus on disorders of the skin, eyes, and nose that cause the body to attack its own cells.
“I knew I wanted to do something that would benefit mankind,’’ he recalled. “This seemed to me a very fertile area that hadn’t been well researched before.’’
During six years at UCLA, he delved deeper into the mysteries of blistering disorders, before moving to Boston in the 1980s to pursue a doctor of medical science degree at the Harvard School of Dental Education. He wrote his thesis on identifying genes associated with pemphigus, a disorder that affects the skin and mucous membranes, and pemphigoid, a related disease more common in older patients. Both are caused when the immune system mistakenly destroys healthy tissue. Together, they are believed to affect less than 25,000 people in the United States.
After earning his Harvard degree in 1988, Ahmed received grants from the National Institutes of Health that enabled him to discover proteins targeted by pemphigoid in the mouth and eyes. He presided over a NIH-funded lab, taught at Harvard’s dental school, and lectured worldwide on the devastating effects of these diseases.
“They disrupt everyday life,’’ he said, “everything from going to the bathroom to putting on your clothes to brushing your teeth.’’
As his reputation grew, his patient base swelled to include people from 38 states who weren’t responding to the cortisone or immunosuppressant drugs prescribed by local doctors, or who suffered painful side effects from those treatments.
By the early 1990s, he was seeing more than 300 patients and began experimenting with a pemphigoid regimen involving intravenous immunoglobulin, or IVIG, a costly commercially available drug, in combination with other medicines. IVIG temporarily replaces antibodies some patients lack.
The drug was approved for some forms of leukemia and other diseases, but not expressly approved by the Food and Drug Administration to treat blistering disorders. But for many of Ahmed’s patients, the disease’s progression stopped after the drug was administered, and their symptoms ebbed.
Paul Konowitz, a surgeon at the Massachusetts Eye and Ear Infirmary in Quincy, was diagnosed with pemphigus in 2004 when he was 46, after developing sores in his nose, mouth, and throat. “I lost 25 pounds in a six-week period because it was difficult to eat,’’ he said.
Konowitz’s doctors referred him to Ahmed, who prescribed a combination of IVIG and Rituxan, a drug often used in chemotherapy. “It worked very well,’’ said Konowitz, who has been disease-free since 2005 and considers Ahmed “a real hero.’’
After convening an advisory panel of dermatologists and consulting with national blistering disease specialists, Yeh ruled in 1998 that her office would pay for three IVIG treatments over six months. Ahmed insisted many patients needed 15 to 20.
Ahmed and his patients asked NHIC to rethink its policy and petitioned federal lawmakers. Meanwhile, he kept submitting bills for pemphigus patients as well as for certain pemphigoid sufferers he called “dual diagnosis’’ patients, saying they also had pemphigus antibodies. He did so even though NHIC had never covered pemphigoid treatments using IVIG.
Still, under the new coverage policy, Ahmed had to curtail some treatments. As a result, he said, a number of patients’ conditions deteriorated, and some died, including Alice Goldrick, 84, who lived with her daughter, Eileen Barnacoat, in West Townsend.
“It was too late for my mother, and she continued to go downhill’’ without treatments for pemphigoid, Barnacoat said.
Ahmed appealed to federal Medicare officials in 1999, seeking coverage for his IVIG regimen for both diseases. And Medicare, after a review of research data, made a national decision in 2001 concurring that the benefits to patients justified coverage. Since then, it has reimbursed for IVIG treatments to all US patients with the diseases.
But that ruling came after the US attorney’s office in Boston had begun investigating Ahmed’s billing practices.
On June 15, 2000, returning to Boston from his mother’s funeral in India, Ahmed was served with a subpoena from the US attorney asking for patient records. A grand jury was convened in 2002, and special agents interviewed dozens of patients and referring doctors. Three years later, on March 16, 2005, Ahmed was arrested in front of his Brookline home as he left for work.
“They just said ‘freeze,’ ’’ he said. “I had no idea what was happening.’’
US Attorney Michael J. Sullivan unveiled a 24-count indictment on charges of mail fraud, health care fraud, obstruction of justice, and money laundering. Ahmed was accused of defrauding the government of $5.4 million by falsifying diagnoses and then billing Medicare.
The heart of the case was that he illegally sought Medicare payments for treating more than two dozen pemphigoid patients by reporting them as if they suffered from pemphigus. Following the controversy, Ahmed, who insists he only billed for patients diagnosed with both conditions, was dropped by a private insurer, Harvard Pilgrim, and lost his staff appointment at New England Baptist Hospital where he had been based for more than 20 years.
Some have continued to question Ahmed’s claims about the “dual diagnosis’’ cases.
Two specialists on blistering diseases, contacted for this story, said the number of patients carrying antibodies for both pemphigus and pemphigoid is so small that each could recall seeing no more than one in their careers. They also said there is no evidence that many IVIG cycles over a long period is more effective than a few cycles, and that when it is administered with a less expensive drug, Rituxan, as Ahmed does, it may be the Rituxan that does most of the good.
“I don’t think there’s good evidence the IVIG adds anything to the Rituxan for pemphigus,’’ said Dr. John R. Stanley, chairman of the department of dermatology at the University of Pennsylvania Health System in Philadelphia. “For pemphigoid, there’s even less evidence.’’
Dr. Grant Anhalt, director of the dermatologic immunology lab at Johns Hopkins Hospital in Baltimore, questioned Ahmed’s motives for administering huge doses of IVIG. “I don’t think it was necessary,’’ he said. “You have to ask whether he was doing it because it was medically necessary or because it was financially beneficial.’’
Ahmed said he has seen more dual diagnosis patients than other doctors because he treats patients for whom no other therapies work.
In court documents, Ahmed estimated that he personally earned $786,000 from the Medicare payments cited as fraudulent. The agency paid out a total of $5.4 million, he said, but the bulk of the money went to a contractor to cover the cost of drugs, nursing, and equipment. The $2.9 million he eventually agreed to pay back to Medicare came from personal savings, he said.
Prosecutors, in a 2007 letter outlining their plea deal with Ahmed, said that while he profited from reimbursements, his treatments apparently worked. “Many of defendant’s Medicare pemphigoid patients . . . had not previously responded to other therapies . . . but benefited from these IVIG treatments, including some whose pemphigoid symptoms were arrested or halted,’’ the letter said.
All but the obstruction charge against Ahmed were dropped. Jeremy M. Sternberg, the assistant US attorney who tried the case, declined to comment for this story.
In addition to paying restitution, Ahmed was fined $20,000 and sentenced to six months of house arrest, though he could travel with permission. He also performed 400 hours of community medical service in nursing homes.
And he kept working with blistering disease patients, many of whom he sees without charge — pending this week’s Medicare ruling.
Jason Meisterling, a Somers, Conn., truck driver whose pemphigus makes it difficult for him to swallow food, waited until he was summoned into a tiny office where Ahmed asked to him to assess his condition.
“I’m up about 70 percent,’’ Meisterling said. “But it still feels scratchy when the food is going down.’’
Ahmed nodded. “That indicates the healing has not been complete,’’ he said softly, looking into Meisterling’s mouth.
Later, alone in his office, Ahmed said he worries about what will happen to his patients — especially those on Medicare — if their insurance is cut off.
“These very sick patients who have no other options,’’ he said. “For many of them . . . it’s either me or the undertaker.’’
Robert Weisman can be reached at email@example.com.