Health

Tuesday, Apr 22 2014 05:00 PM

THE PULSE: Sickle cell patients, advocates hope to raise quality of local treatment

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    Courtenay Edelhart covers health care for The Californian. Reach her at cedelhart@bakersfield.com, at Facebook.com/TBCHealth or on Twitter@TBCHealth.

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By COURTENAY EDELHART, Californian staff writer cedelhart@bakersfield.com

TRAINING FOR SICKLE CELL: Full disclosure. Like one out of 12 African Americans, I am a carrier of the genetic trait for sickle cell anemia. So are my sister, two of my nieces and my daughter.

Sickle cell disease is an inherited blood disorder characterized by sickle-shaped red blood cells. Healthy, disc-shaped red blood cells are flexible and pass through blood vessels freely, but sickle cells often clump together and create blockages.

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ABOUT YOUR REPORTER

Courtenay Edelhart covers health care for The Californian. She writes in this spot every Wednesday. Contact her at cedelhart@bakersfield.com, at Facebook.com/TBCHealth or on Twitter @TBCHealth.

Carriers of the trait typically go their whole lives without symptoms, but if two parents have sickle cell trait or another change in hemoglobin (a component of the red blood cell that transports oxygen), there is a one in four chance they will have a child with the disease, one chance in four of a normal child, and a 50 percent chance of a child with the trait.

My poor mother did everything one could reasonably ask to breed the thing out of the family gene pool. She married outside her race and my two children -- her grandchildren -- are adopted.

Still, the gene for this deadly blood disorder persists in our family, and it turns out the Central Valley is a lousy place to have sickle cell. Not that there's any such thing as a good place to have it, but some regions have more expertise than others.

Physicians familiar with the disease and the pain management it requires are sorely lacking in Kern County, which is why the Hina Patel Foundation for Sickle Cell Disease is holding an educational seminar for health care providers.

It will be from 8 a.m. to 1 p.m. Saturday in CBCC's Community Wellness Room, 6501 Truxtun Ave.

The seminar is free and includes breakfast and lunch.

Participants will hear hematologists/oncologists from UCLA and the Children's Specialty Center of Nevada speak on how to diagnose and treat the disease.

"With cutting edge research and new treatments, patients in other areas are living into their 40s, but here in the Central Valley they're dying in their 20s and 30s because people don't understand it," said foundation co-founder Bhavna Patel, who lost a teenaged daughter to sickle cell.

"One of the big misperceptions is that sickle cell only affects black people. Another problem is that patients are labelled drug seekers."

It's true that sickle cell is most often found in people of African descent, but it's also common in people from the Mediterranean, Southern Europe, the Middle East and India.

Patel is from India, where a whopping quarter of the population carries sickle cell trait.

Then there's that drug issue.

I mentioned that moon-shaped red blood cells sometimes clog blood vessels. When that happens, it inhibits the delivery of oxygen to the blocked area. The result, among other things, is horrible pain that can last anywhere from a few hours to weeks.

Treatment options at such times include hydration, blood thinners, transfusions and pain medication.

The pain relievers are addictive narcotics, so sickle cell patients who need them frequently are sometimes viewed with suspicion.

Raymond Ingram, 25, of Bakersfield, has to go to the hospital almost every other month with crisis-related pain.

"It's the worst pain ever," he said. "It's hard to describe. It's excruciating."

Local emergency rooms tend to be stingy with pain medication, Ingram said. It's only after he's admitted and seen by his regular doctor that he truly gets relief.

Christina Agee, 40, has had so many bad experiences with doctors not taking her 11-year-old daughter's sickle cell seriously that she drives her to Palo Alto whenever there's a serious problem.

Agee said she and her husband were naive about the quality of care here when they relocated from San Diego in 2003.

"Honestly, I regret the move now that I'm more aware," she said.

It's a big problem that there are no pediatric hematologists/oncologists in the Central Valley, said Dr. Pam Kempert, an associate professor of pediatrics at UCLA and one of Saturday's speakers. More experts in pain control also are needed in the region, she said.

Barring that, "patients need to establish themselves with a provider who they see all the time so they can have someone who knows them medically and psychosocially rather than just coming to the ER whenever they have pain," Kempert said. "Doctors are a lot more comfortable prescribing long-term pain medication to someone they know they're going to see again in one or two weeks."

This isn't just an issue of comfort.

Depending on the location of the blockage, an untreated crisis can cause short- and long-term organ damage and possible heart problems, strokes and kidney failure.

Ingram lost a 27-year-old cousin with sickle cell to a heart attack last year. She died shortly after being released from a hospital in Arizona.

"That was really hard," Ingram said. "We were really close."

He welcomes any effort to educate Kern County health care providers so that local patients here don't die or suffer needlessly.

"I don't like dealing with doctors who know less about the disease than I do," Ingram said.

Health care providers can visit www.hinapatelfoundation.org to register.

If you're not a health care provider but want to help, mark 6:30 a.m. to noon Sept. 13 on your calendar. That's the date of the foundation's annual run/walk fundraiser at Riverwalk Park. Proceeds benefit social, recreational and medical programs for patients and their families.

PERCEPTIONS OF OBAMACARE: Democrats had hoped that resentment of the Affordable Care Act would ebb as consumers saw its benefits, but a new Gallup poll has found attitudes toward the new health care law remain generally negative.

Of 1,009 randomly surveyed adults nationwide last week, 43 percent approve of the new law and 54 percent disapprove, according to Gallup.

Americans' overall approval breaks down along political party lines.

A vast majority of Democrats asked, 79 percent, approved of the law, and 69 percent thought it will make the healthcare situation better. In contrast, 87 percent of Republicans disapproved of the law, and 77 percent thought it will make the nation's healthcare worse.

Independents in the survey were more negative than positive toward the law. Sixty-five percent of them disapproved of the law, and 53 percent believed the law will make the healthcare situation worse, compared with 26 percent who said better.

HEALTH FAIR IN TAFT: The 14th annual Taft Health Fair will be 8 a.m. to noon Saturday at Buena Vista High School, 900 North 10th St. in Taft.

There will be free medical and dental screenings, $50 comprehensive blood tests and $30 prostate cancer screenings.

Fast 12 hours prior to blood tests.

For information, call 765-4124.

VOLUNTEERS NEEDED: Optimal Hospice Care is recruiting volunteers to work with the terminally ill and their caregivers in Kern County, especially in Lamont, Arvin, Taft, Maricopa, Shafter, Delano, Wasco and the Kern River Valley.

Among other things, the agency is looking for bilingual speakers, notary publics, hairstylists, musicians, singers, pet therapy teams and veterans. Orientation training and volunteer support systems are provided free of charge.

For information, email rfrankhouser@optimalcares.com or call 716-4000.

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