Sickle Cell Needs More Funding, Advocacy To Help More People

By Leonard E. Colvin
Chief Reporter
New Journal and Guide

September is Sickle Cell Awareness Month in the United States; however, for the  past decade, the United Nations has been observing World Sickle Cell Day on June 19.

The  Sickle Cell Disease Association of America, Inc. (SCDAA) is collaborating with sickle cell advocacy groups and community-based organizations around the theme  “Shine the Light on Sickle Cell,” a day-long awareness campaign. The intent is to increase public knowledge of sickle cell disease (SCD) and the sickle cell trait (SCT), and the challenges experienced by patients and their families and caregivers.

According to  local advocates working to create better health care options and support services, more advocacy, funding and protective policies are needed for people impacted by sickle cell disease and sickle cell trait.

Diane Creekmore is a member of Sickle Cell Families and Peer Advocates (SCFPA) who are pursuing those goals,

Most of the members of the SCFPA  have family members impacted by sickle cell disease or sickle cell trait..

Last year the organization was among others like the  Sickle Cell Association of Hampton Roads which pushed to bring attention to the criminalization of patients who enter hospital emergency rooms seeking help for sickle cell crises.

Periodically people with the trait or the disease suffer episodes of excruciating pain caused by the clogging of passageways to vital organs by the sickle-shape of their red blood cells.

Habitually, Creekmore said, emergency room personnel wrongly suspect that people suffering from such symptoms are faking them to secure doses of morphine, which relieves the suffering.

State officials have placed strict impositions on dispersing morphine for pain to deter its use by persons who may be opioid addicts.

“They want to give them Tylenol or aspirin which does nothing to stop their suffering,” said Creekmore. 

“Also, so disrespectful, the (personnel) fail to apply proper protocols and provide  liquids and other meds to reduce suffering. So these people are handed a low-level painkiller and sent home.”

Last year the state, with the support of the Governor’s office, agreed to exempt people from the strict guidelines related to administering powerful and addictive opioids like heroin and others when they display typical pain episodes due to  sickle cell trait or sick cell disease.

But Creekmore said this is just one of the several challenges facing people impacted by sickle cell disease locally and nationally.

“We need more laws and guidelines, sanctioned by the state to address some critical issues facing people with sickle cell,” said Creekmore who lives in Virginia Beach.  “My group is hoping to build support from lawmakers, other advocates, and the medical community to make it happen.”

Creekmore said she hopes state-mandated E.R. protocols would be established to assure that sickle cell disease patients suffering from pain are not disrespected and that they are provided proper treatment and meds.

She also would like to see an adult care clinic for people with SCD or SCT which would compliment  the  services provided by personnel at the Eastern Virginia Medical School (EVMS) and other medical outlets.

The Children’s Hospital of The King’s Daughters has a treatment center which has some 600 patients now. Creekmore wants one for adults in the region.

Creekmore said efforts should be devoted to inspire the Black community to donate more blood for sickle cell disease patients.

She said  African-Americans have compatible antigens in their blood which is naturally compatible with the blood types of other Blacks who constitute most of the people affected by sickle cell disease.

Judy Anderson is the Executive Director of the Sickle Cell Association in Hampton Roads and provides various supportive services for SCD and SCT patients, including physician referrals.

She and Creekmore talk often about the issues of funding and services.

She said although she supports such ideas,  the lack of funding for sickle cell  disease is overshadowed by the nation’s other health spending priorities.

Anderson said the issues facing sickle cell disease patients in pain in the E.R. are complicated and prioritized by hospital protocols and the insurance industry.

“But they must also realize that a hospital E.R. does not respond to sickle cell patients’ pain who think “they should be getting better treatment,” Anderson said. “They must also know their rights so they can fight for good care.”

Anderson said sickle cell disease patients should be proactive and  use the Sickle Cell Association network’s “Get Connected” medical portal which gives medical professionals access to their records and history.

She said this will speed up treatment and reduce  suspicions  that they seeking to “acquire drugs to get high.”

Anderson  said many people who have SCD or SCT rely on Medicaid (for working poor) or Medicare (for the aged), the nation’s two largest government-funded insurance programs.

Physicians view people with sickle cell disease as hard to treat, with health care that is too low and  “does not produce enough profit for them.” Consequently, physicians may seek to avoid them.

Anderson said the medical treatment and support infrastructure for HIV via the Health Department in Norfolk   is funded with $7 million in federal funding.

Nationally, for sickle cell disease,  it is virtually non-existent.

“Five years ago  the National Institute of Health  (NIH) budgeted $450,000 nationally for research and demonstration grants. The Medical Center of Virginia  (MCV) got most of the state’s share. The Richmond facility managed to share some of money with EVMS,” Anderson said.

The Eastern Virginia Medical School does have on staff medical personnel who are trained to treat SCD and SCT patients, collaborating with Sentara, she said.

“And with the resources they have, they do a great job,” said Anderson. “But unless you have a huge medical research and training center with many patients, it’s hard to get money  for  sickle cell,” said Anderson.  “Virginia does not have one. Nationally, the sickle cell network has  applied for another fusion of funds for $2.3 million.”

“The (funding) focus is on diabetes, cancer and the opioid crisis,” said Anderson. “The opioid crisis is at the top of the list because it affects so many other areas.”

Anderson said that statewide the Sickle Cell Patients Census stands at  5,000 plus. She said 2,500 of them are in Hampton Roads, receiving treatment from not only the EVMS/Sentara medical partnership, but other medical outlets, including Riverside on the Peninsula and  Bon Secours.

“I agree with Diane Creekmore and her group that more services and resources are needed,” said Anderson. “But we also need more people and patients to help us advocate like they do. We also need more funding and that would help a great deal. Right now, we are the bottom of the totem pole.”