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OPINION/ FORUM ? ? ? ? ~ Chronicle EOEST H. PlTI Pu;\ i^ner C cvFoublIc Elaine Pitt Bu^no* viuw&rr Michael A. Pitt u*t?ing T. KEMN WaLKEI Maasmi Ediior A Child's Race Against a Deadly Disease Marian Wright Hdtlman Guest , Columnist Tw o-_\ ear-old Case Hogan is a bright. .happvv child with a sunshine smile a ho is in a desperate race against a degenerative dis ease-that > causing the grad ual deterioration of hi> bodv A medicaT diagnosis revealed that Case has Hunters ?Syndrome, also known as MPS II This rare, incurable genetic disorder interferes with the body's process of breaking down and recycling molecules known as gly ' coVarr :rioglycans or GAGs that build up and are stored in ihe joints, organs, and brain. ? v Hunters Svndrome suffer ers experience a progressive physical decline and. in most cases . profound mental hand icaps bv late childhood. Hunters Syndrome also often mvohes cardjac damage, skeletal abnormalities, respi Tatory impairment, and other difficulties. Case alreadv suf fers from developmental delays, impaired speech, and stiffening joints that often cause him to lose balance and fall Children with this condition have an average life span of about 15 years. Like more and more fam ilies in America, the Hogans srs confronted with paying health care costs for a sick -.hild that are rapidlv escalat ing beyond their reach. Case receives six-hour-long intra venous en/v me replacement treatments even Thursday which cost $7 .500 each - S390.000 a year Aside from doctors' visits, he needs about 250 therapy sessions a vear - 100 sessions of physi cal the rap v, 100 of speech therapy, and 50 of occupa tional therapy The therapy keep* the joints m hi% knees, shoulders and wrists loose and slows the progress of the disorder while helping Case maintain and develop his motor sk ills and dexterity The medical treatment and therapy have r>een invaluable They've changed Case from a listless child to an energetic, lively boy who' actively engages With other children and is becoming more independent. His progress comes at a pncc. however Fighting this degenerative disorder has placed Case's parents in great financial peril His mother. Melissa, is a self employed consultant and his father. Christopher, is a small-business employee They have insurance through Christopher's employer The insurance policy has ? 55.000 annual deductible, and after that, it pays 80 per cent of Case's medical expenses up to SX.tXXJ (and 100 percent after that >. But the policy only covers GO of the required 250 therapy ses sions: And the Hogans. who live near Nashville, Tennessee, have had to pay tens of thousands of dollars for gas. food, and tra\el to out-of-town specialists and for child care for their two other children, causing the family to slip deeper into debt-. ' r Presently. Case is eligible for supplementary financial, assistance under the early intervention provisions of the ? Individuals with Disabilities Education Act IDEAi. The IDEA assis tance has been a great benefit to the family, but Case is only eligible for the program until he turns three on March 12. 2010. a cut-off date that weighs heavily on his par ents. The increasing costs of health care are one of the main reasons more than 8 million children have no health insurance. It's an appalling state of affairs when even two-income fami lies like the Hogans have trouble cobbling together enough money to ensure their children receive all the medically necessary care they require. Too many middle-class families have too few- finan cial options to help pay for their children's medical bills ? they earn too much to be eligible for the Children's Health Insurance Program (CHIP) ? which Congress is about to abolish?but not enough to buy private insur ance. And even when they buy private insurance, it rarely covers all their child's medical costs. Parents should never be in the position where they just can't afford their child's health care and face familv bankruptcv. Why are millions of chil dren in America still unin sured or underinsured. and still more are on the verge of losing what health coverage ihe> do have?- The answers cannot be Becau?-e your par ents make too much money or not enough money: or. You could get help if sou lived in another -tate: or. It's too complicated to treat what's wrong with you Nor -hould the answer be - as it is for two-thirds of the chil dren who are uninsured today but are eligible for CHIP or Medicaid - You must face insurmountable bureaucratic barriers to receive coverage That's whs Congress must pass a health care reform bill this year that guarantees children the com prehensive health and mental health care they need - care that is affordable and simple to get and keep. Under the current health reform propos als. millions of children could face higher costs for health coverage and have fewer benefits. Ft would be a tragedy if millions of chil dren end up worse rather than better off after health eare has been "reformed " Marian Wright Edelman is president of the Children 's Defense Fund. For more information about i ihet Children's Defense Fund. %o t o http://www.ehildrensdefense orgf. "I TUINKIUEVRE WEfet JO DSOJ5SYCUR 'END-OP-UPt' OPTION*...." N. Joyce "" Payne Guest Columnist AARP believes that no one - of any age - should go 'hungry Vet many older peo ple must make the devastating choice .to either pay fpr their medications or their groceries. The struggling economy has, resulted in an increasing number of families'; left to wonder w hete. their next meal will come from. One result is a dramatic rise in the number of individuals and families visiting food banks each week. - and the associated stress on food banks to meet the new demand. The need for con venient and meaningful food assistance programs is criti cal, ?' Of particular interest to the AARP Foundation is the impact this has on older Americans There are an esti mated 3:6 million people aged 65+ who live in po\em in the United Slates, according to a 2007 Census Bureau report, and trillions of others who may qualify ^or Federal assis tance programs like SNAP (formerly knows as the Food Stamp Program!, which can alleviate much of the worry and anxiety associated with paying for groceries each month:. V ' ? For older adults, w ith lim ited incomes, especially those who .live alone: food assiv tance programs can help improve overall health. The healthier people axe. the more likely they are to take care of their daily needs and live independently. , Unfortunately, only 34 percent of eligible older Americans receive food assis tance - leaving millions of dollars untouched. The most common reason people do not receive SNAP benefits is that they don't realize they may be eligible. But recent program enhancements mean that more people may be eligible to apply. llie old routine yf stand ing in the grocery store line while people watch recipients tear food stamp coupons from a book is no more. Once a person's application is approved, benefits automati cally get loaded on a debit1 style card, which is accepted at most grocery stores, and there are no hidden fees. The average monthly benefit for older Americans is $72 for individuals arid $90 per household. In addition to supporting healthier food options. SNAP also contributes economically to communities The USDA says, that every $5 in new SNAP benefits generates nearly twice as much (S9.20) in total community spending. SNAP can be a life chang ing value for individuals, fam ilies and communities, but only if the millions of quali fied individuals apply for the benefit. Currently, only 9 per cent of SNAP recipients are age 60+, however, a much larger number of the elderly population is potentially eligi ble And though SNAP is the federal name for the program, state programs ma> use SNAP or another program name to refer to this food assistance benefit. Individuals can find more information about how to apply for SNAP and receive information about other pub lic benefits via AARP's Benefits QukkJLIXK Web site at www aarp.org snap. In these tough economic times: AARP remains staunchh committed to con necting those in need with information and access to pro grams. which offer real relief and assistance in navigating their basic life needs. We encourage all older Americans and those who care for them to learn more about SNAP and apply if they're eligible. .V. Joyce Payne. EdD., of Washington, D C., is a mem ber of the AARP Board of Directors and the chair of the AARP Foundation Board. Black Political Power is Exaggerated George Cutty Guest Columnist The annual Self Congratulation Political Weekend in Washington. DC., formally known as the Congressional Black Caucus Foundation's Annual Legislative Conference and informally known as CBC Weekend, is over But after a series of feel-good panel dis cussions. with members of Congress darting in and out of rooms, and even a speech by President Barack Obama ? with requisite non-stop party ing thrown in for good meas ure - the true needs of most African Americans are no closer to becoming a reality than before Black political junkies descended on the nation's capital for the gather ing. To be fair, there is much to celebrate The CBC has grown from 13 members when it was established in 1971 to 42 numbers, not counting 'Dollar Bill" Jefferson, who is on his way to a federal prison. House Whip Jim Cly burn ( D-S.C.) is the third-ranking Democrat, four African Americans chair important House committees and !7 head subcommittees, and a former CBC member is now president of the United States However, before you start signing Happv Days Are Here Again." let's put things in perspective When you add one African-American senator to the 42 House members, including two who can't vote except in committee, that's only 4? out of 535 members of the House and Senate, which is 8 percent. It sounds good to say that the president is a former member of the CBC. though he wasn't all that active and never took on a leadership "?mte in the caucus But the sad truth is that for many reasons, including his need to be presi dent of "all people. " Barack MCT Photo House W hip Jim Clyburn. Obama is much more moder ate than most members of the liberal Congressional Black Caucus. Consequently, he is more willing to make compro mises that may, in the end. not serv e the best interest of most African Americans. That does not mean he isn't concerned about issues that are para mount to Blacks. Instead, that simply means that he is a politician doing what politi cians do best - compromising. The combination of a president determined to gov ern from the center of the political spectrum and limited African-American representa tion in Congress can some times spell bad news for Blacks. The debate over whether the public option will be part of health care legisla tion making its way through Congress is a case in point. Of nearly 50 million Americans without health insurance, most are people of color Therefore, in some instances, this is a matter of life and death. Candidate Barack Obama was clear in his belief that in order to drive down medical costs, the federal government needed to provide a public option, similar to Medicare, that would provide competi tion that would force the insurance companies to offer more reasonably priced pre miums. discontinue turning away those with pre-existing conditions and removing caps on how much coverage they will provide those in need. But President Obama is now singing a different tune. While reiterating his prefer ence for a public option, he has scolded fellow Democrats, urging them to be open to other alternatives. In his recent speech before a joint session of Congress, President Obama said that under his plan, it is acceptable that the public option be extended to small businesses and people without any cover age. a figure he estimated to be less than 5 percent To bring back an old TV commercial and refrain from an earlier presidential cam paign: Where's the beef? Extending the public option to less than 5 percent of the population while leav ing more than 95 percent of the public to rely on the whim of private insurers is not my idea of change we can believe in. NAACP President Benjamin Jealous pointed out the hypocrisy of conservatives who normal!) tout the advan tages of a free market yet favor non-competition w hen it comes to health care. They object to a public option in whjch the federal government would infuse more competi tion into the S2.5 trillion a year health care industry. According to statistics compiled by the Kaiser Family Foundation, insurance premiums have risen each year between 5 percent and 14 percent. Over that same peri od. w ages have increased only 2 percent to 4 percent, mean ing Americans must use more of their income for insurance. "What a public option is all about is trying to give Americans the very essence of free market capitalism, choice and competition." Jealous told reporters. Both the CBC and President Obama are very good with words. The CBC has issued statements arguing that the public option should be incorporated into any health care reform proposal that becomes law . In his speech to the CBC Saturday night. President Obama was eloquent as usual. He said. "This economic crisis has made the problem in the communities of color much worse." He said the crisis has hit those groups "with particu lar ferocity." Bui being sensitive and using the right language is no substitute for direct action. Having an African-American president and Blacks holding a record number of leadership positions in Congress is meaningless if. in the end. they can't bring about real change for those who need it the most. George E. Curry, former cditor-in chief of Emerge magazine and the NNPA News Service, is a keynote speaker, moderator, and media coach. He can he reached through his Web site, mmm'. georgecurry.com.
Winston-Salem Chronicle (Winston-Salem, N.C.)
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