In a 5-to-4 decision, the U.S. Supreme Court upheld the Obama administration’s Affordable Care Act (ACA) in 2012, including the controversial “individual mandate” requiring people to buy insurance or pay a penalty. Chief Justice John Roberts, who wrote the opinion for the majority, sided with the more liberal associate justices – Stephen Breyer, Ruth Bader Ginsburg, Sonia Sotomayor and Elena Kagan – providing the swing vote declaring most of the law constitutional.

Passage of the ACA in 2010 divided both Congress and the country. Portions of the law affect virtually everyone – from doctors and hospitals to insurance companies, from small businesses to large corporations, and from anyone who is now a patient to anyone who may one day become a patient.

Supporters of the ruling are hailing it as a win for all Americans, but particularly for anyone with a chronic medical condition. "The ACA has already begun making a difference in the lives of people with arthritis," says Amy Melnick, chief public policy officer for the Arthritis Foundation. "Young adults with pre-exiting conditions gained protection from health insurance discrimination with the age-extension allowed for dependent coverage under a parent's plan. Seniors paid less out of pocket for prescriptions, narrowing the Medicare Part D 'donut hole' gap in coverage. And people with rheumatoid arthritis, osteoarthritis or any other costly condition who had been shut out of the private market were able to get coverage via the Pre-existing Condition Insurance Plan, or PCIP. 

The law eliminates many of the risks faced by the 50 million Americans with arthritis and the countless others with chronic conditions. In addition to guaranteed insurance coverage, other provisions will be phased in over the next few years, including no lifetime caps on insurance benefits and an end to unlimited out-of-pocket costs.

“This is an important victory for people with chronic diseases. It means that starting in 2014, they are guaranteed to be able to obtain health insurance. Had the decision gone the other way, insurers could have continued to shut them out,” says Robert I. Field, PhD, a law professor at Earle Mack School of Law and a professor of health management and policy, at Drexel University School of Public Health, in Philadelphia.

“The ruling also means that all of the consumer protections in the law will also survive,” says Field.

Not everyone is happy with the decision. Opponents view the law as federal intrusion into what ought to be a private realm; they oppose the individual mandate, which requires that individuals buy insurance or face a financial penalty. They also fear the ACA will increase regulatory burdens and that the law will limit their access to care. Others question whether the act will lower insurance premiums and cap spiraling health care costs, as promised. Still others are concerned that employers who are unable to provide coverage will be forced to cut jobs instead. Congressional Republicans have vowed to repeal the law.

The Controversial Mandate

The most embattled part of the law has been the individual mandate, which requires that anyone who can afford to buy insurance must do so or pay a penalty based on individual income. People who cannot afford even the least expensive insurance plan would be exempt from the penalty. Opponents believe that purchasing health insurance should be an individual choice, not a governmental requirement. The Supreme Court upheld the mandate, but in a surprise move it said the individual mandate wasn’t constitutional under the Commerce Clause of the Constitution – which was the main argument put forward by the Obama administration. Instead the Supreme Court ruled that the penalty is a form of tax, which Congress does have the power to impose.
 

High Stakes for Pre-existing Conditions

At stake in particular was coverage for anyone with a pre-existing condition, says Neeraj Sood, PhD, associate professor at the School of Pharmacy and director of International Programs at the Leonard D. Schaeffer Center for Health Policy and Economics, both at the University of Southern California. “If the law had been repealed, people with chronic conditions would most likely not have been able to get affordable coverage. They are the big winners because of this Supreme Court decision.”

Currently, the access to care law states that children younger than 18 cannot be denied coverage because of a pre-existing condition.  Adults with pre-existing conditions don’t yet have that protection but can enroll in a pre-existing condition insurance plan, or PCIP, which is subsidized by the federal government.  “But in 2014 that hurdle will disappear,” says Sood. “Anyone with a pre-existing condition cannot be denied coverage.”

Although the amount people will have to pay for coverage is not yet clear, the law establishes health insurance exchanges, or a marketplace where insurance companies will now compete with each other, explains Sood. “There will be three to four kinds of plans available that will vary in terms of generosity, but it will be clear whether you are buying a ‘gold’ or ‘bronze’ plan. And all insurance companies will be competing in this marketplace so that should lower premiums for everyone,” he says.

For people like Janine Jones, a 25-year-old college student with juvenile arthritis and fibromyalgia in Placentia, Calif., the ruling comes as a tremendous relief. “Now, I have the option of getting my own insurance in 2014,” says Jones who is covered under her mother’s insurance policy until she is 26. “And I can’t be penalized for having a pre-existing condition.… Now I can make decisions about my life based on what I want to do, … not just on what’s going to keep me healthy.”

Access to Preventive and Coordinated Care

Coverage for preventive care will be expanded. “Because of the Affordable Care Act, many aspects of health care screenings are covered,” says Jan Wyatt, 63, a retired nurse and nurse practitioner in Round Hill, Va. Wyatt, who is also chair of the Public Policy Committee for the National Board of Directors of the Arthritis Foundation, has had rheumatoid arthritis, or RA, for eight years and also has osteoarthritis, or OA. “When you have RA and OA, you are at risk for other chronic conditions, so it’s important to have good screenings and access to physicals so those can be detected earlier.”  

She notes that preventive care is important not only for people who have arthritis. “The incidence of arthritis is only growing as the population ages,” says Wyatt. According to the Centers for Disease Control and Prevention, or CDC, arthritis is expected to affect 67 million Americans by 2030. “Now with a focus on prevention, providers may be very attuned to assessing patients for arthritis risk.”

The law also establishes a Prevention and Public Health Fund, which will help finance proven prevention programs that address chronic health issues like obesity and smoking, while providing grants to local communities to develop wellness services.

Another aspect of the law is the organization of accountable care organizations, or ACOs, which are designed to benefit both Medicare patients and people who are privately insured. ACOs establish one party – a hospital, say, or a primary care provider – responsible for coordinating care, explains Sood. “People with chronic conditions often have a variety of illnesses and various providers. Coordinating with a single provider can benefit patients in terms of improving health and reducing cost,” he says, noting that private plans are already experimenting with ACOs, but it may take a few years for ACOs to catch on.

Easing Individual Costs

Supporters say the law also will help slow health care’s drain on pocketbooks. “No one, including those with chronic conditions, will have to worry about lifetime caps on coverage or annual coverage limits,” says Sood. And as of 2014, there will be caps on how much people have to pay out of pocket. The caps will be based on a sliding scale, depending on income.

“This is all good news,” says Karen Siegrist, 56, a nurse practitioner in St. Louis, Mo., who has had psoriatic arthritis for a decade, and OA for five years. “I get 100 percent coverage through my employer, but I’ve worked with families who have capped out of insurance plans and lost their homes. This will help protect people from that.”

The law also addresses the “doughnut hole,” or gap in prescription coverage under Medicare. Before the ACA passed, Medicare patients paid 25 percent of drug costs until they had spent $2,800, then they had to pay full cost until they had spent $4,550. Since 2011, patients formerly in the doughnut hole have had prescription costs lowered by 50 percent as a result of the law. By 2020, the doughnut hole for brand-name and generic drugs will cease; patients will pay 25 percent of the cost of drugs until they reach their yearly cap on out-of-pocket spending.

“The doughnut hole was something I was really worried about,” says Wyatt, noting that the retail cost of some biologic drugs are $3,000 a month. “I’ve been on biologic medications for eight years, and the costs are not going down. Many patients have to pay a high percentage of that cost. I had a real fear that if the national mandate was not recognized, insurance companies could go back to cherry-picking what benefits they wanted to support.”

Help for The Littlest Patients, Too

The law also aims to encourage future doctors to go into underserved subspecialties – like pediatric rheumatology – by creating a loan repayment program. “Some people have to wait six months to see pediatric rheumatologists,” says Siegrist, whose son developed psoriatic arthritis at age 17 and epilepsy at age 20. The loan forgiveness amount for doctors can be as high as $120,00 in return for up to three years of service in an underserved specialty.

Medicaid Expansion Up in the Air

Another controversial part of access to care law is its requirement for Medicaid to expand to include a greater proportion of low-income earners or lose federal funding. The Supreme Court ruled that it is constitutional for Congress to offer states funds to expand Medicaid coverage to millions of new individuals. States would agree to expand coverage in exchange for new federal funds, and if a state accepts the funds, it must obey the new rules. However, the court also ruled that the federal government cannot withhold all Medicaid funding to states that decline to expand Medicaid. “What states will do is an open question,” says Sood. Prior to the Court’s ruling, 26 states had challenged that provision.

Field agrees. “The effect of the ruling on the Medicaid expansion is yet to be seen,” he says. “States will be able to opt out of the expansion without losing all of their federal Medicaid funding. Time will tell how many states choose to do this.”