Phoenix leprosy patients dread clinic’s closure

She had fevers, chills and infections. Her hands and feet were stiff and couldn’t feel.

Despite worsening symptoms after the birth of her second child in 2001, the South Phoenix woman’s doctors were flummoxed.

One Arizona doctor suspected anxiety or depression. Another said she probably had rheumatoid arthritis.

When medical science didn’t give her answers, she turned to superstition. A practitioner in her native Mexico suggested a liquid potion extracted from roots and trees. That didn’t work either.

Her 6-year search for a diagnosis ended in 2007 when an infectious-disease doctor at a Phoenix community health center suspected she had a disease that has plagued humans for centuries but is rarely found in the United States.

Testing at a Maricopa County clinic confirmed the doctor’s suspicion: She had leprosy.

“I was pretty upset,” said the 37year-old woman, who requested that she not be identified because of the historical stigma of the disease that persists today. “We were raised Catholic, and I always thought it was bad if you had this. I thought I had what the Bible talks about.”

Leprosy, now referred to as Hansen’s disease, is a chronic disease caused by a bacterial infection that affects the skin, nerves, eyes and breathing tract.

Once thought of as highly contagious, scientists now know leprosy is difficult to spread, with 95 percent of humans immune to the disease.

What’s more, it’s easy to cure with a course of antibiotics. Those who don’t get timely medical care, however, can get chronic foot wounds, disfigured or paralyzed hands and feet, even blindness.

About 6,500 Americans have leprosy, though only about half of them require active medical care, according to the National Hansen’s Disease Program.

Through most of the 20th century, people with the advanced disease would be sent to the National Leprosarium in Carville, Louisiana., later renamed the Gillis W. Long Hansen’s Disease Center. Medical advancements allowed the federal government to establish a network of outpatient clinics in 1981 to care for people who lived otherwise normal lives.

But Trump administration budget cuts will force the closure of all but 5 of the 17 regional Hansen’s Disease clinics this year, including one in Maricopa County. That could disrupt care for people like the South Phoenix woman.

The Hansen’s Disease clinics are funded by the federal Health Resources and Services Administration, or HRSA, which oversees the National Hansen’s Disease Program.

Officials with HRSA confirmed that Maricopa County and other clinics have been notified about discontinued funding.

The federal Hansen’s Disease Program “has decided to reduce the number of ambulatory care clinics to align resources with levels of care that patients receive,” said Martin Kramer, HRSA’s director of communications.

An HRSA budget document indicates the federal agency requested a congressional appropriation of $11.6 million in 2018, a $3.5 million cut from last year.

Kramer said that the national program will still provide training, education, outreach and free medication to doctors who treat Hansen’s disease. Patients will have access to free medication. Clinics in Los Angeles, Florida, New York, Texas and Puerto Rico will remain open.

Patients with severe complications or disabilities will be referred to the Baton Rouge, Louisiana, clinic — the federal Hansen’s Disease Program’s main clinic — “free of charge,” Kramer said.

The main federal clinic shifted to Baton Rouge, after the state of Louisiana took ownership of the Carville hospital in 1999 and allowed residents the choice of either relocating or staying at Carville.

Dr. Ronald Pust, who has staffed Maricopa County’s clinic since 1983, and others said they have been frustrated by a lack of communication from the federal program.

“It has been one of the most obscure, ill-planned things I have ever seen in public health,” Pust said. “Nobody will tell us who made the decision and why.”

Dr. Ken Saffier, who oversees a recently-closed clinic in Contra Costa County, California, said that Hansen’s Disease Program administrators could not adequately answer his questions about the funding cuts.

Saffier said that doctors who treated leprosy patients have been in contact with congressional staffers in the hopes that funding can be restored. Another possibility is a lawsuit, he said.

“We’re concerned patients will not get care,” said Saffier, who added that leprosy patients whose care is delayed can develop irreversible nerve damage. “We are uncomfortable with the idea there will be a gap in care — or no care.”

The Maricopa County Hansen’s disease clinic operated once a month at the Maricopa County Department of Public Health center, at 1645 E. Roosevelt St. in Phoenix. The clinic is staffed by a physician, a nurse, a physical and hand therapist and an orthotics expert who provides devices such as custom shoes for people with disfigured feet.

The Maricopa County clinic has served 109 patients, including 29 people who have sought care within the last five years. The clinic will close this month because of the Trump administration’s budget cuts.

Maricopa County public health and clinic workers have reached out to the 29 patients to inform them about the closing. The county hopes to identify doctors in metro Phoenix who can provide care for these individuals.

Pust said part of the challenge is finding doctors who are familiar with leprosy.

“Most medical students had about 20 minutes of a lecture on this disease crammed in the middle of other diseases,” Pust said. “Many don’t realize the disease still exists anywhere.”

It’s critical to find proper medical care because the longer it takes to diagnose leprosy, the more damage it can inflict.

The 37-year-old south Phoenix woman said she was declared disabled as a result of her diagnosis. Her hands have been disfigured from tendon damage. That made it impossible to continue her job as a retail cashier, she said.

When she was diagnosed, she was sent to Louisiana, where she received medicine to cure her disease and an operation to close a wound on her left foot.

After she returned to Phoenix, the skin on her foot ruptured again. The Maricopa County leprosy clinic arranged an operation through a Phoenixarea orthopedic surgeon who cut out pieces of bone and infected skin.

She has been problem-free for more than a year.