Outwardly, Kerry Tucker of Atlanta looks perfectly healthy.
But for the past 25 years, Tucker has battled constant stiffness and pain from psoriatic arthritis.
“Mornings are the toughest,’’ Tucker said at an Atlanta arthritis conference last week. Then there are the flare-ups that leave her in bed for days.
She’s among patients taking a breakthrough “biologic” drug – medications that have made a major difference in their ability to handle arthritis symptoms.
Yet these specially engineered drugs have a hefty price tag for insurers, employers and patients. That cost has consumer advocates alarmed about the potential financial impact on families.
Roughly one in four Georgians are estimated to have a form of doctor-diagnosed arthritis, according to the Atlanta-based Arthritis Foundation. More than 800,000 of them are “limited’’ by the condition, the CDC says.
Thousands of Georgia children have a form of juvenile arthritis.
The disease has been generally characterized as an inflammation of one or more joints. The main symptoms of arthritis are joint pain and stiffness, which typically worsen with age. The symptoms can develop gradually or flare up suddenly.
Arthritis is sometimes called “the hidden disease” because people who have it often appear healthy to the casual observer. “A lot of times you can’t tell, looking at a person,” Tucker said at the annual meeting of the Arthritis Foundation last week.
Georgia’s prevalence of arthritis is about average. But with the aging of America, the rate is expected to double in the state by 2030, said Amanda Niskar, national scientific director for the Arthritis Foundation.
“It’s so personal – each person is different in how it affects them,’’ Niskar said.
There are more than 100 different forms of arthritis, including psoriatic arthritis, which affects Tucker. As its name indicates, this particular form is connected to the skin condition psoriasis. But that may not be obvious to sufferers, because the skin rashes and the arthritic symptoms don’t necessarily occur at the same time or with the same level of severity.
Tucker said she has an injection every week of Enbrel, one of the biologic drugs that have been introduced over the past decade to slow or halt the progression of joint damage. Pro golfer Phil Mickelson, who has psoriatic arthritis, does endorsements for the drug.
She pays $150 a month under her insurance plan for the medication.
The list price of these drugs can run $1,000 to $3,000 a month.
Ann Palmer, president of the Arthritis Foundation, said her daughter takes a biologic drug for arthritis that has a cost of $2,500 a month.
The drug is life-changing, Palmer said, but the price of such drugs can overwhelm families. Many patients with health insurance have high co-pays or co-insurance with these medications.
“It’s all about the money,” Palmer said. “As we talk to the large insurers, all they want to talk about is the cost of biologics. Employers want to talk about the biologics.”
She said that patient advocates, insurers and drug companies need to come to the table to discuss the price of biologics. “We want to create a dialogue, recognizing that it’s a free enterprise system.’’
Asked about the costs of biologics, a spokeswoman for PhRMA, a drug industry trade group, said in a statement that medicines have resulted in significant progress against costly and complex diseases.
“Rheumatoid arthritis treatments are now able to target the underlying sources of inflammation, slowing disease progression, and making disease remission possible,’’ said Holly Campbell of PhRMA in a statement.
“Researching and developing new medicines is a long, complex and costly process,” Campbell said. “The average cost to develop a new medicine has almost doubled to $2.8 billion, and just one out of six medicines reaching clinical trials has a chance to make its way to patients.”
The toll on children
Of the more than 50 million Americans who have arthritis, about 300,000 are children.
Amy Pennington of Dunwoody said her daughter Emme, 6, takes a biologic drug for her form of juvenile arthritis, which affects her entire system.
Emme gets an infusion every other week. She is able to go to school, but because of her condition, she has had frequent absences, and is repeating kindergarten this year.
“The evenings are really bad,’’ Pennington said. “You see the swollen joints in the evening.”
Pennington and her husband own an interior design firm, and they have a family insurance plan. With the cost of Emme’s five medications, the family meets its $5,000 annual deductible in January.
The Penningtons, though, pay a premium of $1,400 a month for insurance.
Then there are the missed workdays and “the emotional roller coaster’’ for the family in dealing with Emme’s condition.
“For me, Emme is truly the most courageous person I’ve ever met,” Pennington said.
Like Tucker, she hopes for a cure – and in the interim, tries to bring more awareness of arthritis to the general public.
More than 9,000 children in Georgia have juvenile arthritis, yet there are only four pediatric rheumatologists in the state, Pennington said. “You’ve got people driving hours just to see a pediatric rheumatologist.”
“A lot of families can’t afford to get their kids to the best doctors.”
Arthritis hits a lot of men and women in the prime of their lives, Tucker said. “We’d like to make more people aware of it,’’ she said.