Jericho Bennett's bubbly laughter belies a heart-wrenching malady.
At age 2, he struggles with cystic fibrosis, a potentially fatal genetic disorder that is extraordinarily difficult and expensive to treat.
With after-tax earnings of barely $1,000 a month, Jericho's dad, Anthony, 37, can't dream of paying even a fraction of the cost of his son's life-sustaining medications, which run nearly $5,000 every 30 days. One drug alone costs $2,300 every two weeks.
Anthony Bennett, who lives in his parent's modest East Hampton home, strains to pay bills. Good jobs, he said, are hard to find and those with medical benefits are nowhere in sight. "I would love to pay for his medications, but I don't earn that much in a month," he said. "Even when I had two jobs I didn't earn enough."
Bennett is not alone.
Paying for medications remains difficult if not impossible for legions of people on Long Island and beyond, even in the face of health care reform, medical policy analysts say.
"For very complicated life-threatening diseases, the cost of drugs can be prohibitive," said Arthur Levin, director of the Center for Medical Consumers in Manhattan.
"People of modest means just can't afford them even when they have insurance. So, as always in our crazy society," Levin added, "people who can least afford things get hurt the most."
U.S. consumers, on average, spend nearly a third of $1 trillion annually on prescription medications of all kinds, federal and health care industry statistics show.
And they are charged, at minimum, twice as much for medications as their counterparts elsewhere in the West. Worse, prices of brand-name medicines continue to rise, some analyses have found, outpacing inflation.
From September 2011 to September 2012, Express Scripts, one of the country's largest pharmacy benefit companies, found the cost of most widely used brand-name prescription medications -- as a group -- rose 13.3 percent, outrunning the 2 percent overall rise of U.S. inflation. The organization examined costs on everything from cholesterol-lowering medications to blood thinners.
Some families, Levin said, have had to decide between food and medicine, even amid a proliferation of generics for some drugs.
The pharmaceutical industry vigorously defends drug pricing and emphasizes that many drug companies lower costs on expensive medications for low-, middle- and some upper-income families.
Matt Bennett, senior vice president at PhRMA, the Pharmaceutical Research and Manufacturers of America, whose members include the country's leading pharmaceutical and biotechnology companies, said too often medicines are viewed as a cost and not as a savings.
Consumers tend to look at medication price tags, Bennett said, and not the savings from repeated hospitalizations, surgeries and other sometimes futile procedures that fail to provide hope for a cure.
"Innovative medicines are often used to help patients for whom alternative treatments are not, or are no longer, effective," he said.
Affecting many wallets
Some of the reasons people can't afford medications include unemployment and underemployment. But rising co-payments and the high price of numerous drugs are wallet issues that affect people across the income spectrum.
Dr. Andrea Leeds, a Bellmore pediatrician, pays $1,400 a month for personal health insurance covering her, her husband and three younger children.
"We're covered but we have no eyeglass care, no dental and no prescription drugs," said Leeds, who runs a small practice out of her house.
Because her husband has a heart condition and requires six expensive medications, Leeds said she has purchased them from Canada on occasion, but finds Canadian pharmacies unreliable because they don't ship in a timely fashion.
Her patients, she said, have concerns as well about medication costs. "The middle class: This is where we're being hit the hardest," Leeds said.
On Long Island, about 12 percent of residents under age 65 have no health insurance, according to U.S. Census Bureau data released in August.
That percentage amounts to nearly 300,000 people in Nassau and Suffolk counties lacking coverage -- and by extension, a way to afford or at least defray medication costs.
The inability to afford medicine has been an ongoing concern, a problem captured statistically four years ago in a study by Sarah Eichberg of Adelphi University.
Fourteen percent of Long Islanders were so pressured by prescription drug costs that they resorted to pill splitting, skipping medication doses or failing to fill prescriptions altogether, Eichberg found.
Some of the loftiest medication prices are for so-called specialty drugs, aimed at complex medical conditions. Prices can easily reach five figures -- and higher.
The only federally approved cancer vaccine costs $99,000 for three doses. Some life-sustaining medications run $200,000 annually, and a new cystic fibrosis drug for a subset of patients runs $294,000 for 12 months of therapy.
All of those medications belong to an evolving class of drugs known as biologics. That means they may be genetically engineered or made from proprietary cellular or protein formulations. There are no generic forms of these drugs.
Last year, the U.S. Food and Drug Administration approved 22 new specialty drugs, most of them biologics. The average cost for those medications, drug industry data show, runs $10,000 per month of therapy.
Pulmozyme, a biologic designed for patients such as Jericho Bennett, with cystic fibrosis, diminishes the thick mucus that collects in the lungs, the signature symptom of a disease that also damages the digestive tract. The drug, his parents say, costs $2,300 every two weeks.
The rare disease affects about 30,000 children and adults in the United States and is the most common genetic disorder nationwide among Caucasians.
Peter Saltonstall, president and chief executive of the National Organization for Rare Disorders, said families coping with rare, complex conditions have been driven into bankruptcy and home foreclosure because of the staggering costs.
"Rare diseases tend to be severe and chronic, and many people affected by these diseases struggle with overwhelming medical and financial challenges," Saltonstall said.
Patient programs exists to help families pay for Pulmozyme. Its maker, pharmaceutical giant Genentech, offers them, including one for people without health insurance.
Advocates for patients, however, say the assistance programs for numerous medications are not well-publicized, require doctors to apply on a patient's behalf and entail tax forms and other paperwork.
Even when people have insurance, these advocates say, health insurance companies have made it difficult for some policyholders to secure the medications they need.
For example, as of Jan. 1, health insurer UnitedHealthcare, which has a pharmacy network of 64,000 national and independent outlets, stopped honoring manufacturers' coupon cards for half a dozen medications, including Humira, a biologic for rheumatoid arthritis.
The coupons shave about $400 off the total drug price, eliminating its high co-payment. All of the biologic medications for rheumatoid arthritis are expensive, running a minimum of $2,000 a month and up, said Amy Melnick, Arthritis Foundation vice president for advocacy.
She said her organization is dismayed by the insurance company's policy, saying it dissuades patients from using Humira, which along with the other biologics has transformed the disease from disabling to livable. UnitedHealthcare said coupon cards encourage patients to rely on higher-tier, expensive drugs when lower-cost medications work just as well.
Humira is based on a proprietary molecule. Pulmozyme is inhaled as a mist. It is vital medication to which Jericho Bennett has access only through public health insurance. Anthony Bennett, who works for an East Hampton grocer 33 hours a week, said his son has thrived as a result of the therapy.
Still, he said: "The average person can't afford them. I can't . . . And it's mostly the average person out there who needs these medications."