(Bloomberg) — Judith Mayer Lynn, uninsured and battling breast cancer, should be a fan of the Affordable Care Act. Instead, she barely knows about it.
The 56-year-old Nevada woman was unaware of subsidies in the law that will help people like her buy coverage in 2014, she says. Lynn didn’t know the act requires insurers to pay for prescription drugs, hospital stays and other services she’s spent the last two years scrimping to afford. Nor did she realize she can no longer be denied a policy due to her illness.
Told of the benefits, Lynn remained unconvinced, skeptical of insurers and government alike. “It’s a joke,” she says. “There’s going to be loopholes in all of these provisions.”
Such ignorance about the 2010 law is hardly unusual. An April poll by the Kaiser Family Foundation found that 40% of Americans weren’t even sure the act remained law. That’s raising concerns among supporters that many who stand to gain the most from the ACA won’t sign up. A weak showing could undercut the act’s effectiveness, handing a political weapon to its Republican foes as the U.S. Congress rolls toward mid-term elections next year.
“We haven’t seen a lot of energy from the administration on public education,” says Henry J. Aaron, a health-policy analyst at the Brookings Institution in Washington. “They ceded the field to those who were largely hostile to the bill to frame it in the public’s mind.”
Supporters don’t have much time left. In just over 100 days — on Oct. 1 — states and the federal government are due to open the exchanges
The law’s backers are starting to respond. Organizing for Action, an advocacy group born of President Barack Obama’s campaign, debuted a television ad yesterday as part of a “seven-figure” media buy to spread the word. Enroll America, another nonprofit group supporting the enrollment drive, will hold a series of strategy sessions this week with volunteers around the U.S., a spokesman, Ellis Brachman, said by e-mail.
Even in California, one of the states farthest ahead in building an exchange, many don’t understand the law, says Erica Pham, a health-policy attorney at Oakland-based Kaiser Permanente, the nation’s biggest nonprofit insurer. Many either don’t know about the law or mistakenly think it will offer them free health-care, she told an insurance industry conference in Las Vegas last week.
California plans to spend more than $100 million on outreach efforts. Still, local activists fret officials are relying too much on media buys and not enough on a grass-roots effort to motivate the uninsured.
“This is not one of those ‘you build it and they will come’ situations,” says Samuel Chu, president of One LA, a nonprofit group in Los Angeles. “This is really about organizing a community.”
Opponents of the legislation have outspent supporters by 5-to-1 on TV ads, according to advertising analyst Kantar Media.
That, combined with the general lack of awareness of the law, spells trouble unless the Obama team counters with a strong offensive, says Karen Pollitz, a senior fellow at the Menlo Park, California-based foundation who formerly worked as an Obama aide.
The Kaiser poll “underscores that a lot of Americans think there isn’t going to be health reform,” Pollitz says. “When the opening act begins, people who have been engaged in outreach and consumer assistance are going to have to spend a considerable amount of time trying to overcome misinformation.”
It’s only recently that the administration started putting resources toward promoting enrollment. In April, U.S. health secretary Kathleen Sebelius said it didn’t make sense for the U.S. to contact the uninsured long before they can actually sign up for coverage.
The Department of Health and Human Services has focused most of its energy in recent months on building and testing computer systems for the exchanges, which will serve small businesses and people not offered coverage through work.
“Our outreach will kick into high gear this summer leading into the fall, when we’ll be talking to Americans across the country to prepare them to enroll in coverage beginning October 1,” says Joanne Peters, an HHS spokeswoman. “Our deliberative tactics build on the lessons we’ve learned, including reaching people with the right message at the right time, when it’s time for them to act.”
In April, the administration announced $54 million in grants for groups of people called “navigators,” whose job will be helping steer people through the law’s new options. Another $150 million will go to local health clinics to assist uninsured patients in signing up.
The uphill climb to get people enrolled was a chief topic at the insurance conference sponsored by America’s Health Insurance Plans, an industry trade group.
“We’ve got an awareness problem,” John Kaelin, a Washington-based adviser with consulting firm Avalere Health, told the audience. The confusion is “one of our essential challenges in terms of being successful at this.”
Lynn, the Nevada woman suffering from breast cancer, says she doesn’t hold out hope that the law will ever help her.
A former school bus driver from Pahrump, an hour’s drive west of Las Vegas, Lynn was diagnosed with advanced breast cancer in 2011, after finding a lump under her right arm. She was uninsured at the time, she said: The school district where she worked considered her a part-timer, ineligible for benefits.
Since then, Lynn has endured two years of chemotherapy, radiation treatments and surgery to treat cancer that had spread to her lymph nodes and spine.
She’s had help from Access to Healthcare Network, a Reno-based organization that negotiates discounts from medical providers on behalf of the uninsured. Still, Lynn estimates she’s had to raise about $50,000 for her treatment, helped by friends and family, all the while haggling with radiation clinics, oncologists, hospitals and billing companies.
Private carriers have told her she’s “uninsurable” because of the cancer and Lynn said she has too many assets to qualify for the state Medicaid program for low-income residents.
The health care law, though, should help out. Starting Jan. 1, the law bans insurers from denying people based on medical conditions. Additionally, people earning between poverty-level wages ($11,500 for a single person) and four times the poverty level (about $46,000) will be eligible for tax credits to defray the cost of coverage.
The subsidies get more generous for people under three times the poverty level and are especially so at the lowest income levels. In California, the aid will be enough to eliminate the monthly premium on some plans for those earning less than 1.5 times the poverty guidelines, according to Covered California, the state’s exchange. Nevada hasn’t announced its exchange premiums yet.
In an interview at an Access to Healthcare office in Las Vegas, Lynn says she was unaware of those benefits — and didn’t trust Obama to produce them anyway. Insurers will still find a way to exclude coverage, she said.
She recalled one of her surgeons telling her that he was leaving the business because the ACA dictates what he can charge patients — something the legislation doesn’t do. She also says she was worried she would be forced to spend money buying inadequate insurance just to meet the law’s requirement that all Americans buy coverage or pay a penalty.
“I am afraid I am going to be penalized and the government is going to come and take my assets,” Lynn says.
Such fears are common, says Sherri Rice, chief executive officer at Access to Healthcare. When the nonprofit group began asking members about the act last month, about half knew little about its provisions and another quarter were “furious” about it, she said.
Uninsured Americans are used to carriers offering them expensive policies riddled with holes, Rice says. Now many think the law forces them to buy those same plans.
“There is a lot of distrust,” she says. “They need to start saturating people with information. Otherwise, people will just let it slide by when it comes time to enroll.”
Nevada will spend $5.4 million on a campaign over the next 15 months, John Hager, executive director of the state exchange, told the insurance conference last week. California’s exchange plans to distribute $37 million to navigators and other entities to help the uninsured and will invest $86 million in outreach.
California buoyed supporters of the law last month when it announced that premiums for individual plans had come in lower than many predicted. That raised hopes the markets will attract a large customer base with affordable rates, albeit with the trade-off of higher deductibles and narrow provider networks.
“You want outreach and communications with real intensity in the six months when people can go online and sign up,” says Tara McGuinness, a White House spokeswoman, referring to the open enrollment period that runs through March. “We know that if we want to reach people and break through, we’re going to have to have them hear about the new marketplaces multiple times from multiple sources.”
The enrollment drive has been hampered in some Republican-leaning states where governors have refused to build their own insurance exchanges, says Kaelin, the Avalere consultant. While the Obama administration has stepped in with a federally run market, Republicans in Congress have denied requests for more money to promote the program.
Efforts by Sebelius to drum up support for the law through private organizations, meanwhile, have come under attack. Earlier this month, Sebelius was accused by Senator Orrin Hatch, a Utah Republican, of “bullying” companies that her agency regulates into supporting Enroll America, the Washington-based nonprofit that is anchoring the national drive to get people to use the law’s insurance marketplaces.
Sebelius told a House committee that she talked with New Brunswick, New Jersey-based Johnson & Johnson and one other company about supporting the group. She said she didn’t ask for financial contributions and that the requests were no different than those of officials under President George W. Bush when he expanded the Medicare program a decade ago.
To spread the word on ACA, groups like the Universal Health Care Action Network of Ohio have been traveling their states and meeting with people at churches, community centers and senior centers.
UHCAN had hoped the Obama administration would steer exchange funding its way, rather than to Governor John Kasich, a Republican who opposes the health law, says Kathleen Gmeiner, a project director with the group. So far, it hasn’t happened, she said in a phone interview.
Enroll America has expanded to 40 staff members. So far, the group has focused on identifying the uninsured in order to determine the best way to reach them, said Anne Filipic, the organization leader, in an interview last month. It surveyed about 1,800 people last year and has run focus groups to test marketing messages, she said.
By the end of this month, Enroll America hopes to have a statistical model that will help volunteers pinpoint which doors to knock on. Neighborhood visits should begin after that, along with community events designed to highlight the law’s benefits.
It can’t come soon enough, says Aaron, of the Brookings Institution.
For the last couple of years, the Obama administration has done “too little to explain what was in the law, and to mobilize support,” Aaron said. “The explanation, I think, was they were too busy fighting —with the Democratic Party over details since it was theirs to design, and with the Republicans, who indicated they wanted no part of it.”
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