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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

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Activism

COMMENTARY: Let’s Go to The Doctor. Obesity and Weight Management for Men

Obesity is a chronic disease.  According to the Centers for Disease Control and Prevention (CDC), obesity affects 42.8% of middle-aged adults. It is closely related to several other chronic diseases, including heart disease, hypertension, type 2 diabetes, sleep apnea, and certain cancers and joint diseases.

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Clifford L. Williams. File photo.
Clifford L. Williams. File photo.

By Clifford L. Williams

Black males, and men in general, it’s time to take our weight seriously. There’s a need to take a hard look at being overweight and address the issue of obesity.

Obesity is a chronic disease.  According to the Centers for Disease Control and Prevention (CDC), obesity affects 42.8% of middle-aged adults. It is closely related to several other chronic diseases, including heart disease, hypertension, type 2 diabetes, sleep apnea, and certain cancers and joint diseases.

Being overweight is defined as having a body mass index (BMI) between 25.0 and 29.9; a BMI of 30 or higher is considered obese. Although the disease is chronic, it is treatable. For people living with obesity, weight management is more than just tracking the pounds.

Obesity can negatively impact your health, but the good news is that weight loss may improve some weight-related conditions. Knowing your BMI is a great first step when starting the conversation about weight management with a healthcare provider.

The Harvard T.H. Chan School of Public Health notes obesity is generally caused by overeating and moving too little. Suppose you consume high amounts of energy, particularly fat and sugars, but don’t burn off the energy through exercise and physical activity. In that case, much of the surplus energy will be stored by the body as fat.

Black men have seen the red flags and have chosen to act. You may cut off sugar and drinks, but exercise is what really matters. Long walks are a great place to start, and they may lead to other forms of exercise.

Getting more exercise and moving around may do wonders for your weight. Make a few adjustments occasionally; they might add up over time. Also, watch what you consume. No foods need to be eliminated from your diet, but portions should be reduced and healthy calorie intake increased.

Steps That Help Lead to a Healthier Lifestyle:

Consult Your Healthcare Provider About the Risks. You should talk to your doctor and ask them about creating a personalized strategy for you. Some Black men said they didn’t realize the dangers of being overweight until they were sick with diabetes or heart disease and their doctor brought up the link to their weight, according to research published in the Journal of General Internal Medicine.

Work with a Personal Trainer – Losing weight is a team effort that requires both a nutritious diet and regular physical activity. Like diets, there is no “right” way to exercise. You may get individualized advice on what to eat based on your body type and the recommendations of your nutritionist, in addition to a tailored exercise program to help you attain your objectives.

Set Realistic GoalsJust as you shouldn’t anticipate losing weight overnight, you shouldn’t acquire it overnight either. No weight reduction program that uses microwaves exists, and even if it did, it probably wouldn’t last. If your objectives are too ambitious, you run the danger of being disheartened when you fail to achieve them.

To Our Readers:

For information on other health-related issues regarding men’s health, please share your thoughts and/or concerns with the Post Newspaper Group editorial staff.

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Two New California Bills Are Aiming to Lower Your Prescription Drug Costs

“When basic life necessities like medication become unaffordable in Blue States, working people pay the price. As Democrats, we should be leading on making people’s lives better and more affordable,” continued Weiner. It is past time California caught up with other states and put basic protections in place to contain the astronomical cost of basic medications.”

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iStock.
iStock.

By Edward Henderson, California Black Media

Sen. Scott Wiener (D-San Francisco) has introduced two bills in the State Senate that could lower prescription drug prices for California residents.

Senate Bill (SB) 40, or the Insulin Affordability Act — and accompanying legislation, SB 41, or Pharmacy Benefit Manager (PBM) Reform — comprise Wiener’s Prescription Drug Affordability (PDA) Package.

Together, the bills would cap monthly co-pays for insulin at $35 (SB 40) and create regulations for pharmacy benefit managers (PBM) whose negotiation practices, critics say, have resulted in steep price increases for prescription drugs (SB 41).

“It makes no sense that people with diabetes in states like West Virginia can access affordable insulin while Californians are stuck with higher prices,” said Wiener in a statement.

“When basic life necessities like medication become unaffordable in Blue States, working people pay the price. As Democrats, we should be leading on making people’s lives better and more affordable,” continued Weiner. It is past time California caught up with other states and put basic protections in place to contain the astronomical cost of basic medications.”

SB 40’s proposed $35 monthly co-pay was written, in part, in response to the price of insulin tripling over the past decade, Wiener’s office says. As a result of the increase, one in four people using insulin has reported insulin underuse because they can’t afford the full dose.

About 4,037,000 adult Californians have diabetes, with an additional 263,000 cases of Type 1 diabetes diagnosed each year. This rate in new cases disproportionately affects the elderly, men, and low-income patients, Wiener’s office reports.

According to Wiener, SB 41 is his follow-up to similar legislation he introduced last year, SB 966, which was vetoed by Gov. Newsom.

Middlemen in the pharmaceutical industry, PBMs buy prescription drugs from manufacturers and then sell them to pharmacies and health plans. Their position as intermediaries allows them to charge high administrative fees and significantly higher prices for drugs to pharmacies than they paid originally. This practice results in higher costs for patients seeking the prescriptions they need.

“On behalf of the Californians we serve who live with chronic and rare diseases, we are grateful to Sen. Wiener for his commitment and attempt to hold pharmacy middlemen accountable for their anti-patient and anti-pharmacy practices,” stated Liz Helms, California Chronic Care Coalition President & CEO.  “Health care costs continue to rise when patients cannot afford medically necessary medications.”

SB 41 proposes that all PBMs be licensed and that they disclose basic information regarding their business practices to the licensing entity. It also calls for a number of other requirements and prohibitions, including limiting how fees may be charged and requiring transparency related to all fees assessed.

“This bill addresses some of the worst abuses by pharmacy benefit managers: lack of transparency, unfair business practices, steering, and price gouging,” said Jamie Court, President of Consumer Watchdog.

In 2022, drug spending in California grew by 12%, while total health premiums rose by just 4%. Last year, more than half of Californians either skipped or postponed mental and physical healthcare due to cost, putting their safety and well-being at risk. One in three reported holding medical debt, including half of low-income Californians.

So far, there is no organized opposition to the Prescription Drug Affordability package.

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Essay: Let’s Take an Honest Look at Distrust, Disparities and Discrimination in Medical Care

In medicine, we celebrate J. Marion Sims as the father of obstetrics, but until recently, we rarely mentioned that most of his medical breakthroughs were achieved through the suffering of Black women who were not adequately anesthetized as he experimented on some of the most delicate parts of their bodies. Books such as “Medical Apartheid” and “The Immortal Life of Henrietta Lacks” document the long history of Black bodies being used for scientific experimentation without any compensation or acknowledgement.  

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Dr. Imani McElroy. Photo courtesy of Dr. Imani McElroy.
Dr. Imani McElroy. Photo courtesy of Dr. Imani McElroy.

By Dr. Imani McElroy,
Special to California Black Media 

As I became part of the small community of Black female surgeons, who represent less than 1% of all physicians, I embraced the responsibility with an understanding that part of my career would be dedicated to being a voice for marginalized and disenfranchised people.

Growing up in the San Francisco Bay Area, I observed the vast economic divide that contributes to health care disparities. Unstable employment and housing, food deserts, underfunded schools, and escalating living expenses all play a significant role in poor health for Black patients.

They also are a direct reflection of centuries of systemic discrimination and racism that has crippled Black Americans dating back to the era of slavery.

The same issues have followed me personally. I live with asthma, which has quietly impacted my breathing since childhood. I have been fortunate to avoid long-term hospitalization, but I have had numerous visits to urgent care and emergency departments.

I discussed my symptoms with my primary care physicians over the years, but it wasn’t until my third year living in Boston that I found a physician who attended to my symptoms and made the necessary adjustments that finally controlled my asthma. My asthma had progressed steadily for 15 years and despite being in the medical field and being able to describe the decline, my symptoms were ignored.

This is a story that is too common among Black Americans. Even fame could not protect Serena Williams when she had to demand appropriate testing and treatment for blood clots in her lungs following the birth of her first child.

I understood that my role as a health care provider extended well beyond the walls of the operating room and the hospital.

The plight of Black Americans within health care and the discrimination we face is well documented in both medical and lay literature.

In medicine, we celebrate J. Marion Sims as the father of obstetrics, but until recently, we rarely mentioned that most of his medical breakthroughs were achieved through the suffering of Black women who were not adequately anesthetized as he experimented on some of the most delicate parts of their bodies. Books such as “Medical Apartheid” and “The Immortal Life of Henrietta Lacks” document the long history of Black bodies being used for scientific experimentation without any compensation or acknowledgment.

If we are going to have an honest discussion about the root cause of medical mistrust within the Black community, the conversation cannot simply begin and end with the United States Public Health Service (USPHS) Untreated Syphilis Study at Tuskegee.

It’s essential to recognize that the generational trauma endured by the Black community contributes significantly to its skepticism towards medical institutions.

Healthcare advocacy is multifaceted. From physician-led initiatives addressing policy and resource allocation, to research that intentionally and thoughtfully addresses disparities in access and outcomes, to development of integrated multidisciplinary treatment teams for personalized care plans, there is quite possibly no more important step than educating the lay person.

Gone are the days of blind trust in a physician simply because of their title.

Furthermore, being able to empower patients to advocate for their health care needs will also allow physicians to understand how medical conditions impact their patients’ quality of life and everyday activities. Shared decision-making rests on a patient’s ability to trust the providers caring for them. The medical community owes it to Black Americans to afford them this trust.

As an advocate, I aim to bridge the gap between medical literature and lay literature. Making sure that our community has updated and accessible information that can impact their understanding of their medical conditions and improve the quality of care they receive.

As a Black woman in America, I face my own challenges, including navigating the health care system, and finding providers who look like me, understand my unique needs, and are willing to engage with me despite my medical background.

As my family members grow older and begin to interact more frequently with medical providers, I find myself in the frustrating position of having to help them advocate for themselves in a system that does not always listen.

My white coat does not shield me from the realities of being Black in America and thus I feel it is my duty to become part of the solution in addressing disparities in healthcare.

While much of the work to fix this problem falls in the hands of physicians and providers, active participation is required from both sides.

Increased representation in clinical trials will improve our understanding of risk factors and treatment responses. Attending health fairs and community outreach events will help increase medical literacy and understanding. Being persistent and truthful about symptom progression or treatment side effects is equally as important to help inform decision making.

Most of our medical knowledge is hidden behind paywalls buried in medical jargon. My goal is to help make what is happening in the medical community more accessible to our community.

About the Author  

A native of the Bay Area, Dr. Imani E. McElroy is a clinical fellow of Vascular Surgery at USC Keck School of Medicine. She completed general surgery training at the Massachusetts General Hospital in Boston, MA. She has a master of Public Health from the Harvard T.H. Chan School of Public Health and received a Doctor of Medicine from the Charles R. Drew University/UCLA David Geffen School of Medicine. She earned a bachelor’s degree in Biological Sciences from the University of California Irvine.  

This article is supported by the California Black Health Journalism Project, a program created by California Black Media, that addresses the top health challenges African Americans in California face. It relies on the input of community and practitioners; an awareness of historical factors, social contexts and root causes; and a strong focus on solutions as determined by policymakers, advocates and patients. 

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