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Health Disparities

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Akey component of the presiden-tial campaign this year is healthcare, a problem that has beendiscussed in just about every circle andcorner of society. No one will arguethat the need to improve health care is paramount. Children, the workingpoor, minorities, and women are at the top of the list when it comes toneeding better access and higher quality of health care. The goal must be to provide equal health care forevery man, woman, and child. In the United States there is an enormous gap between those withaccess to health care and those without. This gap increases each day,with no end in sight. The question is:where do we begin to create positivechange, ensuring that everyone hasaccess to high quality health care?Chronic pain is difficult enough tocope with without having to search desperately for high quality and timely care. Where you live, your ethnicity, or your race could affect the quality of care you receive. There are many reasons why there are such disparitiesin care and we will explore some ofthem in this issue. Ideas to Close the GapsWhile we dont have the answers to solve the health care crisis, there are many things that can be done to improve the medical management of pain and health care delivery in general. We need more information,communication, persistence, and understanding to help people withpain improve their relationships with their health care providers and possibly improve their ability to obtain quality care.Health care providers, support organizations, educators, legislators,payers, researchers, and health care consumers all play a role in this effort. These ideas would get thingsmoving in the right direction. Implement communication tools that are standard in all health care settings; create consistent ways to communicate symptoms and factors to promote greater understanding of the symptoms and concerns ofthe patient. Increase requirements in pain and pain management education for health care providers. Provide standards in care that must be strictly adhered to, ensuringthat each and every person seeking care is treated equallyby Penney Cowan, Executive Director, ACPA1SUMMER 2008C O N T I N U E D O N P A G E 1 3. . .I N S I D E2 G etting the H elpYou D eserve4 D isparities inPain Care AffectQuality of Life6 I s Pain CareBased on Race?8 An O verviewof Spinal CordStimulation10 Who We AreAffects H ow WeRespond to Pain11 ACPA U pdate11 N ew G roups &Members12 Book Reviews14 TributesConfronting Disparities in Health CareGet the Help You DeserveMembers Overcome Disparities in Pain TreatmentMany of us find it challengingto communicate with our doc-tors about our chronic painand get the help we need. But some ofusdue to other factors over which wehave no controlhave extra challenges.These factorswhere we live, our age,gender, economic or educational level, or even having a prior healthproblemcan interfere with gettingproper pain treatment.Take Louise VanDenHoogen, forinstance. An ACPA facilitator inOntario, Canada, Louise has overcomemuch since being diagnosed with juvenile arthritis at age 16. Now 48, she uses what she has learned to help others.She sees her ACPA group membersstruggling to get equal pain treatmentbecause they live in a rural area with-out benefit of advanced education orsocial status. She tries to help thesepeople with chronic pain identify their health problems and effectivelyreport their pains to their doctor.Louise said one of her members wastold by a doctor she should just stayhome and have babies and not worryabout her health. It took five years for this woman to be referred to a specialist and finally get a diagnosis of fibromyalgia.When Specialist Care is Far AwayLouise lives in Haliburton Highlands, a tourist area where most of the jobsare seasonal, earning it the distinctionof being the second poorest county inOntario. Like many rural areas, theresa shortage of doctors. Medical special-ists, surgeons, and high-tech tests likeCT scans are about 85 miles away, a three-and-a-half hour drive. Because of their limited education and economic circumstances, many residents have poor vocabularies andhave difficulty talking with medicalprofessionals, said Louise.Shell often meet with members justprior to doctor appointmentsor go with them to the appointmentsto make certain they are making themselves clear, so the doctors will listen and respond with appropriatetreatment. Shes good at it because she has learnedthe hard wayby experience. ForLouise, her age creates a large disparityin health care. They dont believe myphysical condition at my age unlessthey see test results, she said. Mybones are comparable to a 75-year-olds.Getting around is not easy.Louise is used to dealing with a number of challenges. She has had constant pain and limited range ofmotion on her right side from thoracicoutlet syndrome since a car accident in1988. She also has fibromyalgia, carpaltunnel syndrome, temporomandibularjoint disorder (TMJ), urinary stenosis, attention deficit hyperactivity disorder(ADHD), and dyslexia, in addition to a joint replacement necessitated by the arthritis.After repeatedly being misunderstoodby medical professionals, Louiselearned to explain everything she could at medical appointments. You cant just sit and demand proper treatment, she said. I try to be open with my doctors so they haveno excuse to treat me with disparity.Your Right to Fair TreatmentShe has become accustomed to havingto speak up for herself in doctorsoffices. Once she explained to a doctorwhy she needed to sit on her hands. It was due to her ADHD diagnosis. It helps me slow down. I find when I explain to them they treat me better.Disparities in health care can result in patients blaming themselves. Theystart to believe they arent worthy ofbeing treated well. After walking awayfrom doctors who didnt treat her fair-ly, I learned to stand up for myselfand believethat I have the right toproper care, Louise said.2| TOP |by Sally Price| TOP || TOP |C O N T I N U E D O N P A G E 3 . . .She said most of her work with groupmembers who experience disparities in their health care is encouragingthem to believe in themselves. She alsoreminds them, When youre a patientand the doctor is not treating you verywell, sometimes (the doctor) is having a bad day. You cant blame yourself.Get a New DiagnosisSometimes disparity in pain treatmentoccurs when a prior medical conditioncomplicates getting a new diagnosis for a fresh problem. That happened to ACPA group facilitator Patrick Goertzof Wichita, Kansas. In January 2007, hefound himself in an emergency roomwith stroke-like symptoms of numbnessand tingling on one side of his body.But the ER team and the admittingneurologist focused on Patricks preex-isting bipolar disorder. He was told his symptoms were psychological andthat he was seeking drugs. Then he was sent home.After six months of trying to get someone to listen to me I fired thewhole crowd, said Patrick. Now Ihave doctors who understand that Ihave chronic pain. Weve developed arealistic treatment plan. Being involvedin ACPA as a facilitator is a part of myplan for living with chronic pain.It turned out that when Patrick reported to the emergency room he was experiencing a rare kind of stroke,one that doesnt show up on an MRIscan for months, he said. He currentlysuffers from post-stroke central nervoussystem chronic pain, which can resultfrom any type of injury to the brain,according to Patrick, a clinical nursespecialist. His symptoms today are aconstant tightness, severe burning, and a ripping kind of feeling on the right side of his body.In the emergency room with strokesymptoms, Patrick was also experienc-ing a daily bout of severe depression.He said, I was in such pain, I was cry-ing. Because I was acting emotionally,[the doctor may have thought] I wasjust seeking drugs.ACPA Provides Focus and ReliefIf I can focus on some activity I canforget about it for a while. Thats whythe ACPA has been so helpful, saidPatrick, who found the ACPA whenresearching pain management on theInternet. Now he is re-establishing anACPA support group in Wichita. Hesaid he uses ACPA relaxation tapes and the workbook in his daily life. I try to live it, he said.Like Louise, Patrick deals with his multiple diagnoses through acceptanceand courage. Since starting medication20 years ago, he deals with depressivesymptoms that come and go. Ive hadthe bipolar a long time and know itdoesnt last longer than a day, he said.He also knows how the two conditionsaffect each other. If I feel the depres-sive symptoms the pain becomes moreintense because Im just focused onmyself and I just kind of get lost inthat a little bit. On those days, he said, I give myself permission to bedown. I do cross-stitch and watch oldmovies. He is also writing a book for children.This author has also experienced disparities in pain treatment due to a prior diagnosis. After a spinal fusionto stop progressive scoliosis (spinal cur-vature) as a child, I had a difficult timegetting my doctors to look beyond mycurvature when I injured my back yearslater and experienced chronic pain. Finally, having no diagnosis other thanspinal arthritis, I had surgery (anotherfusion). Years later, I learned from adoctor trained in osteopathy that theinjury had knocked my sacroiliac jointout of alignment. The surgery and theyears of non-treatment precluded himfrom making any corrections. Lookingback, I see that I should have left thearea to find a doctor who would lookbeyond a prior diagnosis. Yes, disparities do happen. And its up to us to keep on trying and not give up.3If I focus on an activity, I forget about pain for awhile.| TOP |C O N T I N U E D F R O M P A G E 2 . . .Disparities in Pain Care Affect Quality of Lifeby Alison Conte4While many hospitals andphysicians follow set proce-dures for people with heartdisease, diabetes, and other wide-spreadhealth conditions, the course of treat-ment for chronic pain is not firmlyestablished.Further, researchers have found that the treatmen

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