For those who believe in the Affordable Care Act's promise of more humane coverage for more people, the recent news about drug costs is discouraging.
The most effective drugs for some of the most serious diseases -- cancer, HIV/AIDS, diabetes, rheumatoid arthritis, multiple sclerosis, asthma, mental illness -- can cost individuals who can least afford it thousands of dollars a month in copays. In some cases, desperate people are going without the medicines that could save their lives.
Dr. William Harvey of the American College of Rheumatology recently told this story to a congressional panel: A 30-year-old Wisconsin mom with rheumatoid arthritis cannot afford the best treatment -- known as a biologic -- because of high copays and deductibles.
The woman's hands and feet were deteriorating, becoming stiff and swollen. She was trying to ease the pain with an anti-inflammatory drug, prednisone, but was having trouble caring for her children, and soon she might lose her job.
The medication she needs costs as much as $30,000 a year, and through the ACA, she would be expected to pay up to 60 percent, or $1,500 a month.
People like Harvey are calling on Congress to force health insurers to pay more toward the cost of these drugs through the proposed Patients' Access to Treatments Act. Instead, insurance companies say, drugmakers should lower their prices.
My solution would be some of each.
The government could write stricter rules for insurers. In Florida, four companies in the health exchanges require thousands of dollars in copays from patients with HIV or AIDS. It's a sneaky way to get the sickest people to opt for another insurance company -- a profit-maximizing game insurers have played with Americans for decades, with denials for pre-existing conditions and lifetime caps on coverage. Now, those are gone, thanks to the ACA.
If insurers are allowed to price certain therapies out of reach -- through a complicated system of formularies, tiers and classes -- the practice could spread beyond ACA health care exchanges.
"It's uncharted territory," said Wayne Turner, staff attorney for the National Health Law Program, which has filed a formal complaint about Florida's HIV/AIDS coverage. "The insurance industry has been able to exercise a great deal of discretion" over drug coverage.
For example, one man emailed recently to say that his friend can't get a specific cancer drug through his private insurance plan because of the cost. These are questions of life and death.
I'm sympathetic to insurers that have been forced to cover vastly more people and offer new benefits. But can we accept them making profits by denying care?
A single multiple sclerosis drug can cost $4,420 a month, or $53,000 a year. A new hepatitis C treatment, Sovaldi, comes with a price tag of $84,000 for a 12-week cure. To contain expenses, Oregon offers Sovaldi to just one in 10 Medicaid recipients infected with this liver-attacking disease -- the very sickest patients.
Three patients in Arkansas are suing for access to Kalydeco, a cystic fibrosis drug that costs about $300,000 a year.
Many drugmakers offer financial breaks to those who can't afford their medicines, but the programs are limited and require patients to become their own best advocates. That can be asking a lot from someone in a hospital bed.
American health care is facing some difficult choices: Will we ration people's ability to work, parent or even go on living based on the size of their wallets?
Passing Obamacare was just the beginning.