IF THE United States cannot devise a system that offers adequate medical care to patients like Leto, then it has not devised a system that truly works. As frail and thin as she is, Leto is determined to keep active — be it by cleaning clothes or sweeping floors. And her resolve has helped her survive her rare, slow-growing brain tumor, which is known as thalamic cyst ganglioma. When her illness was diagnosed in 1984, making her one of just seven other known sufferers, she was given four years to live. “I decided to fight this thing,” she says. “That’s all I could do. Just keep going.” But despite her strong will, she is reminded of her vulnerability at almost every moment.

Leto’s cancerous tumor has left her with frequent seizures (they occur at least once a month) ranging from full-body convulsions to short, semi-conscious shudders. On seizure-free days, Leto must battle another, equally incapacitating condition that Jeremy Schmahmann, her long-time neurologist at Massachusetts General Hospital, refers to as “thalamic-pain syndrome.” In simple terms, she suffers from chronic cancer pain. Every hour of every day she feels a deep, radiating, hot-and-cold ache throughout her body. Her head throbs with such force that her partner and legal caretaker, Harry Jefferson, likens it to a “lit-up light bulb.” For the past 17 years, Leto has taken countless medications, including narcotic opioids, to treat her pain. After taking as many as six morphine pills daily for years, she now uses an opioid called fentanyl, which comes in a three-day patch form.

But Leto also experiences sharp, occasional soreness known as “breakthrough pain.” This pain can be brought on by the most benign stimulus — a bump against a door, for instance, or a brush of someone’s arm. Yet it feels anything but benign. When this kind of pain strikes, Leto shuts down, figuratively and literally. At times, she even passes out. Says Leto, who speaks with a slight slur due to paralysis: “It is unbelievable. It makes you want to jump out the window and hit your head against the pavement.”

For years, Leto drank a spoonful of morphine elixir as soon as the flare of breakthrough pain hit. But the beneficial effects of morphine declined after a while. “Any person gets used to potent medications,” says Salahadin Abdi, who cares for Leto at the MGH pain unit. She felt more and more burnt out, more and more lethargic. Her seizures intensified. Abdi increased Leto’s dosage until the point where, as he says, “patients get less benefit and more side effects.” By last year, after 12 years on this regimen, Leto had developed such a resistance that, as Jefferson puts it, “morphine was like drinking water for her.”

Last August, Abdi prescribed Actiq, a flavored, fentanyl-containing lozenge, for the breakthrough cancer pain. The federal Food and Drug Administration had approved the drug in 1998 to treat what the label calls “breakthrough cancer pain in patients who receive or are tolerant to opioid therapy.” What is unique about Actiq is not the pain reliever it contains; fentanyl is a 25-year-old generic medicine. Rather, it’s the delivery method. Actiq offers this medication in a lollipop that patients can suck when they feel breakthrough pain. The drug seeps into the cheek membranes, a process technically known as the “oral transmucosal system” of delivery. According to Cheryl Williams, the spokesperson for Cephalon, Inc., the West Chester, Pennsylvania–based company that markets Actiq, this technique allows patients to “feel relief quicker than [with] conventional methods, and control dosage.”

For Leto, the new regimen was “a godsend.” When shooting pain jolted her awake at night, instead of staying up, she turned to Actiq. The drug provided relief within minutes and Leto could get back to sleep. Rather than feeling drugged up each morning, she felt “rarin’ to go.” “I was shocked,” she says. “I had never felt better.”

But her excitement soon faded. After getting two months’ worth of Actiq, and having her $800-per-month prescription paid for by the DMA, Leto arrived at her neighborhood pharmacist on October 5, 2000, and discovered that the agency had cut off her coverage. That the DMA would deny her such an effective drug devastated Leto. “I wanted to give up on life,” she recalls. “I thought, ‘What am I even fighting for? Why do I bother?’”

It wasn’t long before Leto received notice from the DMA that coverage for Actiq had been denied because, according to the October 5 document, “requested services do not meet professionally recognized standards of health care.” Leto, confused, called her pain specialist, Abdi. He sent the agency a letter dated October 10, 2000, in which he outlined his patient’s pain syndrome. Leto needed to keep using Actiq because, he wrote, “she has responded well to it.” But on October 18, 2000, the DMA denied Leto coverage again. Schmahmann, her MGH neurologist, responded with a November 6 note urging the DMA to pay for the drug. He wrote, “This is medically necessary [to] enhance the quality of Ms. Leto’s life by helping eliminate some of her pain.” The DMA never replied.

Leto sought legal help from Amanda Hughes, an attorney at the Boston-based law firm Margolis & Cohen, which has done pro bono work for her. To Hughes, the DMA denial was “obviously wrong.” Leto, she explains, “had doctors who stated that she needed this pain medication. It worked for her.... It seemed silly to deny coverage.” Hughes filed an appeal of the DMA’s decision with the agency’s Board of Hearings, which must hear grievances from MassHealth members within 90 days. Hughes was preparing to argue against the DMA finding, and believes that she could have won a reversal. But before facing the board, Leto found herself running low on Actiq. “Cynthia couldn’t wait,” Hughes says; she needed the drug — and pronto. The firm helped Leto secure a year’s worth of her Actiq prescription free through an indigent-care program run by Cephalon. Jefferson, her partner, says he and Leto ended up dropping the appeal out of “aggravation”: “It got to a point where [the process] was running us into the ground.” They plan to pick up the appeal before Leto’s free prescription runs out in October — and they expect a fight. Leto is even rationing her Actiq, using less than the recommended 120 lollipops per month, for fear that she will be stuck without the drug during the DMA appeal.

Today, Leto and her family are convinced that the DMA refuses to pay for this critical drug because of its high price. (Just last March, the DMA sent another notice to Leto denying Actiq coverage.) Why else, they ask, would Leto receive two months’ worth of the medication and then be cut off? Why else would the agency fail to heed her doctors’ appeals? “The cynical part of me thinks the DMA isn’t too happy Cynthia is still alive,” Jefferson says. After all, he points out, Leto has lived years longer than any of her doctors expected — which could be seen as a liability from an insurer’s standpoint. “The DMA has been playing games over cost,” he concludes. “[Officials] don’t ever say that. But if this medication cost $50 per month, I’m sure Cynthia would have it.”

DMA spokesperson Richard McGreal insists that Jefferson’s speculations are not true. “We do not look at cost in approving or denying drug coverage,” he says. When the agency received the request for Actiq from Leto’s physicians last August, it agreed to fund the drug because, he explains, “we understand it’s often better to give the medication to people right away, and then we will follow up with the documentation that’s needed for approval.” McGreal says Leto’s doctors never provided letters explaining that she has a form of brain cancer, and that the Actiq is medically necessary to treat her condition. When told that the Phoenix has copies of at least four letters written by Leto’s doctors to the DMA, McGreal replied, “Those letters have never been supplied to us.”

But even if the DMA had received the letters, McGreal contends, it would have declined to continue covering Leto’s Actiq because her doctors have prescribed it improperly. “Current guidelines state that [Actiq] is used for end-stage cancer breakthrough pain only,” he says. When asked why these guidelines differ from what’s written on the drug’s own label, which does not specify any cancer stage, he responded, “I’m not relying on what the drug company says. Our medical staff relies on existing literature and research, and this is the standard that we’re using.”

Leto’s doctors scoff at such an explanation. “That sounds like nonsense to me,” Schmahmann says. He adds, “The pain unit is managing her so effectively. We’re markedly affecting her quality of life.... The benefit that we’re going to achieve with this drug is worth the expense.”