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Kaiser Physician Promotes Sickle Cell Awareness Month

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Sickle cell disease is a blood disorder that predominantly affects the African-American community, although it is also common in people with a Hispanic background. The disease is inherited when both parents carry sickle cell trait. An abnormal protein causes the red blood cells to change shape, making them look like a sickle, or a crescent.

According to the National Institutes of Health, early signs and symptoms of sickle cell disease include swelling of the hands and feet; symptoms of anemia, including fatigue, or extreme tiredness; and jaundice. Over time, sickle cell disease can lead to complications such as infections, delayed growth, and episodes of pain, called pain crises.

Most children who have sickle cell disease are pain-free between crises, but adolescents and adults may also suffer with chronic, ongoing pain. Over a lifetime, sickle cell disease can harm a patient’s spleen, brain, eyes, lungs, liver, heart, kidneys, penis, joints, bones or skin.

The disease is serious and life-long, but most people with sickle cell disease can lead long and active lives. For the best outcome, it’s important to get diagnosed and follow a treatment plan.

Every year more than 2,000 babies are diagnosed with sickle cell disease. Babies born in California are routinely screened for sickle cell so that treatment plans can start early. Symptoms vary from person to person. Thanks to advances in treatment, serious problems of the disease are less and less common. Some people are still at risk for chronic pain and other severe complications. Good medical care and regular visits to your doctor can make a big difference.

When a child is diagnosed with sickle cell, a doctor will develop a treatment plan in cooperation with the family. Treatment usually includes regular doses of antibiotics to prevent infection, folic acid to encourage new blood cell formation, and other simple treatments that can help manage or prevent any concerns or complications that come up.
At Kaiser Permanente, we take a holistic approach to sickle cell disease, meeting regularly with the entire family to create and update treatment plans. We have doctors and nurses who specialize in treating children with sickle cell disease. We have experts in managing this disease and a experienced support staff for all the additional needs of the patients and their families.

Living well with sickle cell disease involves more than medication. Keeping hydrated, eating healthily, and being regularly screened for other diseases is a key part of managing the disease. There’s also an emotional component – for children, it can be hard to live with a disease that their friends do not have. Support from parents and family is important. Kaiser Permanente and other providers offer support groups, information about policies like the Family and Medical Leave Act and other resources so that children’s support networks can be strong.

In the past, people will sickle cell disease often faced severe complications. Today, we are getting better and better at managing the disease, and some things you may have heard previously are no longer true. New treatments like bone-marrow transplants and gene therapy are showing promising results in treating and even curing sickle cell disease. However, these are not yet part of routine treatments. With good medical care, sickle cell disease can be controlled and managed, allowing one to thrive.

Hung Tran, MD, Kaiser Permanente

Hung Tran, MD, Kaiser Permanente

Business

NPRC Scores First Advocacy Victory: David Shaw Finally Gets His Wish to ‘Go Home’

POST NEWS GROUP — The National Probate Reform Coalition (NPRC), formed by the Post Newspaper Group in January following years of reporting on alleged abuses within the probate court system, helped Beverly secure the return of her husband, along with the couple’s property and assets.

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Beverly and David Shaw were separated by a hospital after Beverly took David there to treat his dehydration. The hospital determined Beverly was not caring for David property and placed him under their guardianship. Courtesy photo.

For nearly four years, Beverly Shaw fought to bring her husband home.

She watched as David Shaw moved through three nursing homes, became increasingly sedated and repeatedly expressed his desire to return to his wife. Last week, that finally happened.

The National Probate Reform Coalition (NPRC), formed by the Post Newspaper Group in January following years of reporting on alleged abuses within the probate court system, helped Beverly secure the return of her husband, along with the couple’s property and assets.

For NPRC, the Shaw case represents its first major advocacy victory. For David, it means something much simpler: He finally got to go home.

In a letter to the court, Beverly raised serious concerns about her husband’s care at Riverview at the Park Nursing Home.

She alleged that David was frequently heavily sedated and questioned whether his medications were properly documented. She said an aide told her medications were sometimes administered without proper charting, although she acknowledged she had not independently verified that information.

Shaw also said she was unable to obtain David’s medical records and questioned medications he was receiving despite previous medical instructions following his 2023 stroke.

“I believe David has been subjected to abuse, neglect, and unnecessary chemical restraint,” Shaw wrote.

The allegations are Shaw’s account and have not been independently established. But they raise questions central to NPRC’s mission: Who is watching when a vulnerable person becomes subject to guardianship? Who is accountable when family members say they are ignored? And who makes sure the person under guardianship, not the professionals surrounding them, remains the priority?

“Please let me go home”

Perhaps the most compelling part of Shaw’s case was David’s own voice. Shaw told the court she possesses recordings in which David repeatedly expressed his desire to return home.

After 45 years of marriage and four years apart, Beverly argued that David deserved the opportunity to spend his remaining years at home with his wife, receiving individualized care.

NPRC responded with a “Request for Compassion” letter-writing campaign to Judge Thomas Inman, Associate Circuit judge for Ste. Genevieve County, Missouri. The coalition also helped Shaw pursue appropriate legal filings and engaged with her attorney to press for action.

The court ultimately returned David to Beverly’s custody and restored the couple’s property and assets.

“What we have here is the power of coalition,” said Alee Carrino, an NPRC planning committee member. “We applied pressure from all sides, and it worked.”

The victory comes during NPRC’s eighth month of organizing for probate reform. The coalition advocates for greater judicial and governmental oversight, court ombudsmen, mandatory mediation, transparency in probate billing and stronger protections for elders and disabled people.

The Shaw case sends a powerful message: Guardianship is supposed to protect vulnerable people, not permanently separate them from those who love and care for them.

David Shaw asked to go home. His wife fought to bring him home. NPRC supported her every step of the way, and this time, the system listened.

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Commentary

ESSAY: California Can Close Its Colorectal Cancer Gap

POST NEWS GROUP — The numbers are stark. From 2014 through 2018, the age-adjusted colorectal cancer incidence rate was 40.2 cases per 100,000 Black Californians, compared with 35.8 among non-Hispanic White Californians. The mortality rate was 25.3 deaths per 100,000 among Black Californians and 17.7 among White Californians—a 43% difference.

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Dr. Gracie Ann Dinkins, left, and Sydney Y.K. Brown, MA

Every breakthrough in cancer care carries a promise: earlier detection, better treatment and longer life. California has helped deliver that promise through world-class cancer centers, a statewide cancer registry and major public-health investments. Yet colorectal cancer still exposes a painful divide: Black Californians are more likely to develop the disease and far more likely to die from it than their White neighbors.

The numbers are stark. From 2014 through 2018, the age-adjusted colorectal cancer incidence rate was 40.2 cases per 100,000 Black Californians, compared with 35.8 among non-Hispanic White Californians. The mortality rate was 25.3 deaths per 100,000 among Black Californians and 17.7 among White Californians—a 43% difference. 

A later state analysis showed that the incidence gap remained in 2021, at 39.0 versus 35.0 cases per 100,000.

These differences should not be treated as an inevitable consequence of biology. The more revealing explanation lies in what happens—or fails to happen—across the cancer-care continuum: prevention, screening, diagnostic follow-up, treatment and surveillance after treatment.

Colorectal cancer is one of the few cancers that screening can sometimes prevent. Colonoscopy can find and remove precancerous polyps, while stool-based tests can identify people who need further evaluation. The U.S. Preventive Services Task Force recommends screening for average-risk adults from ages 45 through 75, with several acceptable options. But a screening test saves no one if it is never offered, never completed or not followed by a timely colonoscopy after an abnormal result.

California’s cancer-burden report shows both the urgency of the problem and a troubling data gap. Nearly six in 10 colorectal cancers were diagnosed at a regional or distant stage among both Black and White patients from 2009 through 2018. The racial difference in stage was not statistically significant. Yet, the registry report did not include screening information, so it could not show who was offered a test, who completed it or who received the necessary colonoscopy afterward. It also did not assess whether survivors completed recommended follow-up. California can count cancers and deaths, but it cannot yet see every missed opportunity that produced them.

The disparities become clearer after diagnosis. A California Cancer Registry study of nearly 27,000 people with stage I through III colorectal cancer found that Black patients had 39% higher odds of receiving less than guideline-recommended treatment and 78% higher odds of waiting more than 60 days for treatment than White patients. Neighborhood socioeconomic disadvantage explained part of the substandard treatment, but racial differences persisted even after researchers accounted for where patients lived.

Survival reflects the accumulation of these missed opportunities. Among Californians diagnosed from 2009 through 2013, five-year relative survival was 58.8% for Black patients and 65.1% for White patients. After researchers adjusted for age, insurance, neighborhood income, stage, chronic illness and other factors, the survival difference was no longer statistically significant. That does not make the gap less serious. It identifies much of it as potentially preventable: when access, timing and health conditions are unequal, survival will be unequal too.

California already has proof that a better system can work. Kaiser Permanente Northern California built an organized program that identified eligible patients, mailed annual home stool tests to those overdue, offered colonoscopy as an alternative, and tracked abnormal results through follow-up. Screening among Black members rose from about 40% in 2009 to 80% in 2019. Over the same period, their colorectal cancer death rate fell from 54.2 to 20.9 per 100,000, essentially eliminating the Black-White mortality gap within that health system.

The lesson is not that every Californian must join one health plan. It is that equity requires organized care rather than reliance on chance encounters. Mailed screening outreach, patient navigation and guaranteed follow-up colonoscopy should become standard across Medi-Cal, county health systems and community clinics. Health systems should publicly report screening completion; time from a positive stool test to colonoscopy; time from diagnosis to treatment; receipt of guideline-concordant therapy; and completion of post-treatment surveillance—each stratified by race, insurance, and neighborhood.

Transportation, paid time off, bowel-preparation costs, childcare and distrust are not side issues; they determine whether patients can complete care. Community organizations, churches, clinicians and public hospitals should help design outreach from the beginning, not merely deliver messages created elsewhere. Survivors should leave treatment with a clear surveillance plan, navigation support and reminders that do not disappear when active therapy ends.

Closing California’s colorectal cancer gap is achievable. The state has the tests, specialists, data systems and proof of concept. What it needs is the will to connect them. Success should be measured not only by how many cancers we treat, but by how many we prevent, how quickly we act and whether every Californian has an equal opportunity to survive.

About the Authors 

Gracie Ann E. Dinkins, MD, FACS, is a Clinical Assistant Professor of Surgery and Surgery Clerkship Director at the Charles R. Drew University College of Medicine, Department of Surgery. Her mission is to help realize the CDU vision: Excellent health and wellness for all in a world without health disparities.

Sydney Y. K. Brown, MA, is a medical student at the Charles R. Drew University College of Medicine whose work focuses on clinical research, community engagement, and health equity. She is committed to advancing equitable access to high-quality care and improving health outcomes in underserved communities.

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Community

As Part of Your Back-to- School Checklist, Vaccinate

POST NEWS GROUP — Vaccines protect your household and also limit the spread of diseases such as measles and polio. The higher the vaccination rate in a community, the greater the protection for everyone – especially the most vulnerable.

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IStock.

Berkeley Public Health recommends families catch up on immunizations before the new school year begins 

Parents, check that your children return to school up to date on vaccinations. If necessary, schedule a visit with your family’s doctor or with the City of Berkeley’s Immunization Clinic to catch up.

Vaccines protect your household and also limit the spread of diseases such as measles and polio. The higher the vaccination rate in a community, the greater the protection for everyone – especially the most vulnerable. 

Families are encouraged to:

If your child doesn’t have a health care provider, you may be able to access free vaccinations through the City of Berkeley’s Immunization Clinic. Make an appointment by calling (510) 981-5350, emailing phmailbox@berkeleyca.gov, or booking online.

See what shots are required for pre-kindergarten or TK-12th grade, and check that your kids have all their recommended vaccines.

FREE VACCINE CLINICS AUG. 4-13

Children without health insurance or whose insurance doesn’t cover vaccines can get them for free:

City of Berkeley Immunization Clinic
West Berkeley Family Wellness Center
1900 Sixth St.

Hours: Tuesdays–Thursdays, 9 a.m.–3 p.m. 
Closed 12 p.m.–1 p.m.

Make an appointment between Aug. 4–6 or Aug. 1113 for back-to-school vaccine clinics:

Children 18 years and under are eligible for free City vaccines if they are:

  • Medicaid-eligible
  • Uninsured
  • Underinsured (insurance does not cover vaccines)
  • American Indian or Alaska Native

If you are unsure whether you or your child is up to date, the City of Berkeley Vaccination Clinic can help review records and provide recommended vaccines.

FAMILY WELLNESS RESOURCES

Vaccines are just one of the many public health services you can access at the West Berkeley Family Wellness Center. The center is home to the Women, Infants, and Children program, nutrition support, case management services, and a variety of family support services, plus free classes throughout the year.

Vaccinations aren’t just for kids. Throughout adult life, everyone should keep up with their vaccination needs. See recommended vaccines for adults

Get a healthy start to the school year. Check your child’s vaccinations. Make an appointment with your doctor or get free vaccines at the City clinic.

VACCINE INFORMATION AND FAMILY RESOURCES

Get trusted information about the City of Berkeley by bookmarking berkeleyca.govsubscribing to our newsletter, and following us on Bluesky and Instagram.

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