1. Illinois: Sick Children Get Guarantee of Health Insurance Seven-year-old Alex Rowe, who has a rare bleeding disorder, soon will have private health insurance again. He is among more than 5 million Americans under the age of 19 with a pre-existing medical condition who cannot be denied coverage by health insurance companies beginning as early as September under a key provision of the health care reform law. Covering consumers with pre-existing health problems has long been a point of contention and figured prominently in the national health reform debate. The provision in the law also means more doctor choices for consumers who have been forced to pick up government coverage like Medicaid health insurance for the poor, which typically pays medical providers less money. Although most of the benefits intended to expand health insurance to more than 30 million Americans don't kick in for another four years, certain tenets of the bill passed three months ago by Congress and signed into law by President Barack Obama will provide new coverage options in late September, once health plan renewals begin. Observers say these tenets will be more clearly defined, unlike some of the regulations that still have to be worked out between now and 2014. "We are very limited in our choices until this law kicks in," said Christine Rowe, who was let go from her suburban Philadelphia job as a subprime-mortgage underwriter two years ago, and with it lost the private benefits that covered her sick son. Rowe anxiously sought to find private health insurance, to no avail. Although she and her self-employed husband were able to get a family policy for themselves and daughter, their son was not covered because he has von Willebrand disease, a rare disorder that prevents the blood from clotting. Diagnosed shortly after birth, Alex needs more than $30,000 a month of a special clotting medication. "We were denied, denied and denied coverage for Alex," Rowe said. "I knew what the answer from the insurance companies was before I even applied. We were denied more than a dozen times." The last option for the Rowes was to join Pennsylvania's Children's Health Insurance Program, a common way states cover poor children and those who cannot get health benefits from other sources. But because Medicaid and related programs tend to pay medical care providers less than private insurers, the Rowes found themselves with limited options for Alex. "I had to change my pediatrician because my pediatrician did not take Medicaid," Rowe said. "And I had a home care company that came to my house to help me infuse Alex (with his medicine), but we had to lose them and go with a different company. You need to be allowed to shop." Once fully implemented, health reform is designed to give consumers more choices and allow individuals and small groups without employer-based coverage the chance to buy insurance on state-regulated exchanges. The insurance industry has argued that covering people with pre-existing conditions is possible only if everyone is required to contribute premiums. Analysts say covering children with pre-existing conditions first would be easier because it involves a smaller group and is less expensive to the federal government. Children account for nearly 9 percent of the estimated 57.2 million Americans under age 65 with pre-existing medical conditions, which can range from deadly types of cancer to routine chronic conditions such as high cholesterol levels or hypertension. The bulk of those with pre-existing conditions, more than 28 million, are between ages 45 and 64 and tend to have chronic issues that would use more resources, according to a report released last month by Families USA. "This is a confidence builder in what health care reform does," said Ron Pollack, executive director of Families USA, a Washington-based consumer health advocacy group that long pushed for expanding health coverage. "It's a popular group to reach out to … and it's not going to have as big of an impact on costs such as, say, somebody between the ages of 55 and 64 who has multiple chronic conditions." While Congress wanted to start implementation immediately, the law won't take effect until Sept. 23. Some private health insurance carriers are not ruling out complying earlier, pending regulations on final implementation, which is expected soon from the Obama administration. "It would not surprise me if insurers would undertake this earlier," said Illinois Insurance Director Michael McRaith. Critics of the health care reform law have complained that implementation will be too expensive, an estimated $100 billion a year over the span of the first 10 years after 2014, when the bulk of benefits will be provided. But the health insurance industry has been on board with "making pre-existing condition exclusions a thing of the past," wrote health insurance lobbyist Karen Ignagni, chief executive of America's Health Insurance Plans, in a March 29 response letter to Health and Human Services Secretary Kathleen Sebelius. Since Congress passed health care reform, concerns have surfaced that insurers might try to find loopholes to deny coverage to children with pre-existing conditions or set unaffordable rates. Although the cost of obtaining insurance for those with pre-existing conditions can't be predicted, it's more likely to be manageable for people covered by larger insurers. "Health insurance reform is designed to prevent any child from being denied coverage because he or she has a pre-existing condition," Sebelius wrote in her letter to Ignagni. "To ensure there is no ambiguity on this point, I am preparing to issue regulations in the weeks ahead ensuring that the term 'pre-existing condition exclusion' applies to both a child's access to a plan and to his or her benefits once he or she is in the plan." [Bruce Japsen, Chicago Tribune, 06/07/10] 2. California: Big Health Insurance Changes At 15, Miranda Ashland is chatty and outgoing, loves to ride horses, write fantasy fiction about dragons and prophecies, and sing in school musicals. The Saratoga teen also may be among the first Californians helped by provisions of the new health care overhaul that will transform the way insurance companies deal with those with pre-existing conditions. Shortly after Miranda was born, doctors diagnosed her with biliary atresia, a blockage or absence of ducts that prevents bile from leaving the liver and leads to cirrhosis. She got a new liver when she was 6 months old and is now a thriving freshman at San Jose's Lynbrook High School. But Kaiser Permanente is charging the family $2,000 a month to insure four of its five members and when Miranda's mother, Michele, sought a cheaper policy in 2008 she was told Miranda wouldn't qualify for the coverage because of her history of liver trouble. "As a consumer I feel really powerless. They can decide anything they want and that's it," Michele said. "Until we go bankrupt, we have to keep paying these premiums in order to keep having insurance." But soon, patients like Miranda Ashland will have other options. Sometime after July 1, under the terms of the health care reform, California will establish a new, statewide insurance pool that will offer subsidized health insurance to people with pre-existing conditions. Tens of thousands of Californians may participate. Then, as of Sept. 23, insurance companies will no longer be able to deny coverage to children with such conditions, which can range from Miranda's liver transplant to more common diseases such as asthma, autism and diabetes. And finally, in 2014, insurance companies will be prohibited from denying health insurance to adults with pre-existing conditions as well. It's a multipronged approach that is not without risk. For instance, there are concerns that California will not have the money to subsidize the new insurance pool all the way until 2014, even though it is getting $761 million of the $5 billion in federal funds set aside for the purpose - the largest share in the country. Still, advocates and patients say the need is critical. The Insure the Uninsured Project places the number of Californians who can't get or afford coverage because of pre-existing conditions at 165,000 to 396,000. The exact numbers aren't known because there's no legal definition of a pre-existing condition, or requirement that insurance companies report whom they reject for coverage and why. Chris Underwood and his wife, Tiffani, have grappled with that problem. The Hayward couple, both 28, has been uninsured since they lost their Medi-Cal coverage in November, when they began making too much money to qualify for the public health program. The Underwoods, who are self-employed as a barber and hairdresser, tried to buy insurance on their own, but they were quoted monthly premiums as high as $2,400 because of their medical histories: Tiffani has an enlarged heart and irregular heart beat. Chris said he was stunned to learn that his asthma qualified as a pre-existing condition. "That was really outrageous," he said. The couple plans to be among the first in line when the state sets up its new high-risk pool later this year. Children also encounter frustrating rulings from insurance companies, said Kelly Hardy, health policy director for Children Now, a national children's advocacy group based in Oakland. "We've also heard of children who were denied who had ear infections or acne, something that almost everybody gets," Hardy said. Health insurers have pledged to cooperate with the new rules. "We await and will fully comply with regulations,” wrote Karen Ignagni, president and CEO of America's Health Insurance Plans, which represents insurers. But exactly how insurers implement the rules is a big question. And what happens with children, who will get coverage despite their pre-existing conditions four years before insurers must provide it to adults, may tell at least part of the tale. Some advocates and parents fear insurers will agree to cover the children, but with unaffordable premiums. A legislative initiative is aimed at the same concern. Assemblyman Mike Feuer, D-Los Angeles, has proposed limiting premiums for children with pre-existing conditions starting next year. "The insurance companies will definitely argue that this will cost a lot of money," said Bruce Lesley, president of First Focus, a national child advocacy group. He doubts that's really true. The population of children with pre-existing conditions is not large to begin with, he said, and public health programs have shown that insuring children with pre-existing conditions need not be costly. Paul Knepprath, a vice president of the American Lung Association in California, says it may even save money. "We know that emergency room visits are very expensive for everybody," he said. "Providing kids with asthma the opportunity to get treatment, get preventive care, will help save money for all." Tom Ashland owns a construction inspection firm and Michele runs the parent mentor program at the Lucile Packard Children's Hospital, but the couple had to take out a line of credit on their home to help pay their $2,000-per-month insurance premium. The family doesn't eat out, doesn't go to movies, and drives 10- and 12-year-old cars, Michele Ashland said. "There's not a lot to trim." Last week, Kaiser told Michele Ashland it had reviewed her application again and said it would offer the family a less-expensive plan. During the conversation, the Kaiser representative cited the health care overhaul as one reason for covering Miranda, Michele Ashland said. A Kaiser spokeswoman later said that the health plan constantly revises eligibility guidelines. "Additional information from (the family's) physicians about their total health as of today" affected the company's decision, not the new health rules, said Gerri Ginsburg. Michele Ashland is reviewing plan options. At a minimum, she said, the family could save $8,000 a year. The new health care rules "have helped us already," Michele Ashland said. "I really do think this will help a lot of families." [Emily Bazar, San Jose Mercury News, 06/11/10] 3. National: Some States Dilute Children's Health Insurance A federal law that President Obama signed early last year to expand health insurance to 4 million more low-income children has gotten off to a slow start because of budget problems in the states. The law makes more than $10 billion in federal aid available each year through 2013 but requires state funds as well. Faced with budget shortfalls, less than half the states have used it to expand the Children's Health Insurance Program, studies by the Kaiser Family Foundation, National Academy for State Health Policy and Georgetown University Center for Children and Families show. Kaiser's study found about 15 states scaled back coverage by increasing waiting periods, raising premiums, or making signup more complicated. As a result, many states will leave federal money unspent, and the increase of 4 million children may not be reached, state officials and children's health advocates say. "Can they do as much as they would have liked? No," says Ann Kohler, executive director of the National Association of State Medicaid Directors. "Some states are leaving money on the table." The struggles in the states may offer a lesson for the broader insurance expansion projected under a new health care law, designed to cover 32 million more people over 10 years. "State budget situations are so terrible that it's not been possible for most states to do things that are positive in terms of enrollment or outreach," says Vernon Smith of Health Management Associates, a former Medicaid director in Michigan who conducts surveys of the states. The program was created in 1997 by President Clinton and a Republican-controlled Congress to help children from families not poor enough to qualify for Medicaid. In 13 years, it has grown to cover about 5 million children and 300,000 adults per month, with about 70% federal funds and 30% state funds. The renewal of the program by Obama and a Democratic Congress called for the largest expansion since 2002. The Congressional Budget Office estimated 4.1 million children would be added by 2013 who otherwise would be uninsured, mostly by improving outreach. President Obama signs the expansion of the Children's Health Insurance Program at the White House last year. It was designed to cover 4 million more children. By Lawrence Jackson, AP President Obama signs the expansion of the Children's Health Insurance Program at the White House last year. It was designed to cover 4 million more children. Community groups have taken up the cause to find eligible children, even in states that can't afford to add them. "There's some tension," says Andrea Maresca of the National Governors Association. "Clearly, a state can slow-walk its outreach efforts." The new health care overhaul extended the CHIP through 2015 and prohibited states from reducing income eligibility levels, which range up to 350% of the federal poverty level, or $77,175 for a family of four. They still can reduce benefits, raise co- payments and take other steps to cut costs. Since the law was signed, about 15 states have raised income ceilings for children. Arizona, California and Tennessee capped enrollments; only the Arizona cap remains. State policy groups and children's advocates say the situation has worsened this year as states grapple with 2011 budget cuts. "In the current legislative sessions, the response hasn't been as strong," says Jocelyn Guyer of the Georgetown University Center for Children and Families. Alabama, Colorado, Kansas, Montana and Oregon were among the few states to expand programs. Still, advocates say the situation could be worse. Edwin Park of the Center on Budget and Policy Priorities says some states "still are moving forward or aren't making as egregious cuts as many would expect." [Richard Wolf, USA TODAY, 05/25/10]