Connect with us

Health

Ask Dr. Kevin: Stigma in Sickle Cell Disease: How It Impacts Emergency Room Care

Dr. Kevin Williams, the chief medical officer for Rare Disease at Pfizer discusses the stigma associated with sickle cell disease, emergency room treatment for SCD patients, and pain management.

Published

on

By Dr. Kevin Williams (Chief Medical Officer, Pfizer Rare Disease Unit)

The “Ask Dr. Kevin” series is brought to you by Pfizer Rare Disease in collaboration with the National Newspaper Publishers Association (NNPA) to increase understanding of sickle cell disease.

The opioid crisis in the United States is at an all-time high, impacting thousands of Americans every day.

What may surprise you is the impact this crisis has on people with medical conditions that cause severe pain, particularly when they receive treatment in the emergency department (ED).

In light of the current opioid crisis, ED staff have become much more vigilant in monitoring suspected drug abuse. This can have particular implications for people with sickle cell disease (SCD), whose top reason for visiting the ED is to seek relief from the debilitating pain crises associated with their disease.

Unfortunately, ED staff may doubt the legitimacy of the high level of pain relief needed by someone with SCD, and this suspicion has contributed to the stigma that SCD patients are “drug-seeking.” When I was in medical school more than 30 years ago, ED staff treated SCD patients as drug seekers, and opioid abuse wasn’t even considered a crisis then. In light of the current opioid crisis, this stigma has become magnified.

SCD is a lifelong disorder most common in people of African descent and causes red blood cells to form sickled shapes. People with SCD often experience frequent acute pain episodes, called vaso-occlusive crisis (VOC). Currently, treatment for VOCs is limited and primarily involves administration of fluids and pain management, which often includes treatment with high levels of opioid pain medications.

As a result of the stigma related to drug-seeking, the patient is delayed in receiving the adequate and timely pain relief they so desperately needed. In fact, a study published in the “Clinical Journal of Pain” found that people with SCD wait an average of 30 minutes longer in the ED for pain medication when compared to people with other extremely painful conditions, like kidney stones.

Greater understanding of SCD and the pain experienced by people who suffer from the disease is urgently needed to help ensure that stigma and misunderstanding do not stand in the way of receiving adequate and timely medical treatment.

I’m here to answer the most common questions about pain related to SCD in the hope that this information will increase understanding and address some of these misperceptions.

Are SCD pain episodes really that severe?
Yes, they most certainly are. These episodes are characterized by excruciating, debilitating pain. The pain often occurs without any warning—then may worsen over time or escalate suddenly. Nearly all people living with SCD experience these pain crises at some point, but the frequency is variable and unpredictable. Some people with SCD experience six or more pain crises a year.

Why do SCD patients receive pain medicine at such high doses?
Early and aggressive pain management is a priority when treating a SCD patient who is experiencing pain episodes, as multiple studies have demonstrated that more frequent severe episodes of VOC are associated with death.

It’s important to understand that SCD is a life-long chronic disease. The repeated opioid treatments needed for pain relief over a patient’s lifetime often lead to a tolerance, requiring higher doses for adequate pain management.

The SCD individuals treated with opioids eventually learn which opioids and dose are best to relieve or minimize their pain. Many times, this can appear suspicious to health care providers and lead to delayed or inefficient treatment.

Are SCD patients addicted to pain medication?
Unfortunately, this is a common misperception about the disease—not just by ED staff, but by many people in general.

It’s important to highlight the difference between tolerance and dependence. An SCD patient may develop tolerance to opioids due to repeated opioid treatments and thus require higher doses, but this does not mean that they are dependent on—or addicted to—opioids.

In fact, there is no evidence to support the notion that SCD patients have any more likelihood of being addicted to pain medication compared to anyone else. A study in the journal “Pain Medicine” found that in 2013, out of the 16,225 people who died of an opioid overdose, 99.94 percent did NOT have SCD. Thus, the approximately 100,000 individuals living with SCD are making limited contribution to the opioid epidemic.

How can primary care providers help to improve the ED experience for SCD patients?
Primary care providers and people with SCD need to work together to ensure there is a pain management plan in place that will help coordinate care to support long-term pain management.

Along with your primary care provider, the use of prescription drug monitoring programs (PDMP) can easily assist in discovering a patient’s prescription history to help combat the misperception that drug abuse is taking place. Creating individualized pain plans could help result in less frequent admissions, less waiting time in the ER, and shorter length of hospital stays.

Can you share tips on how people with SCD can better manage the ED experience?
First and foremost, finding ways that help to reduce and/or manage pain, such as stress reduction, plenty of fluids, and exercise, before it becomes an emergency is extremely important. If that doesn’t work, here are a few tips:
• Do not delay your visit to the ED when you begin to experience a pain crisis
• Create a “pain plan” with your primary care provider, and either carry a validated copy with you at all times or have easy access to an electronic version
• Carry a document with you at all times that summarizes previous emergency department stays
• Work together with your hematologist and your primary care provider, to ensure your pain management plan is right for you

Additionally, caregivers of SCD patients can also play an important role in improving the ED experience by:
• Recognizing the onset of a pain crisis and encouraging the patient to visit the ED
• Accompanying the patient to the ED and ensuring that all useful documents are brought along
• Providing support and distraction from the pain
• Taking notes on interactions between the patient and ED providers

The next Ask Dr. Kevin article will be available this summer. Until then, join the conversation and find out more information about SCD at, oneSCDvoice.com, a new collaborative platform that provides access to resources designed to increase knowledge, emotional support, and help empower people living with SCD. Sign up for free today.

Dr. Kevin Williams is the Chief Medical Officer for Rare Disease at Pfizer. He pursued medicine after being inspired by his father’s work as a general practitioner in his hometown of Baton Rouge, Louisiana. Dr. Kevin is passionate about raising awareness and increasing understanding of sickle cell disease in the African American community. You can follow Pfizer on Facebook and Twitter.

Continue Reading
Advertisement
Comments

Black History

Doulas Are Helping Black California Moms Navigate Pregnancy–Even as High Mortality Rates Persist

In California, Black women experience the highest pregnancy-related mortality rate — about four times greater than other women, according to statistics. From 2021 to 2023, the leading causes of pregnancy-related deaths included cardiovascular disease, COVID-19, hemorrhage, sepsis, amniotic fluid embolism, and pulmonary embolism.

Published

on

Long Beach resident Cassandra Carter approached the birth of her daughter, Nyomi (pictured), last November with anxiety after losing twins. She is pictured here with her husband.
Long Beach resident Cassandra Carter approached the birth of her daughter, Nyomi (pictured), last November with anxiety after losing twins. She is pictured here with her husband.

After losing twins, Long Beach resident Cassandra Carter approached the birth of her daughter, Nyomi, last November with anxiety. She wanted support for herself and her husband, Adewole, that extended beyond routine medical care. 

“Getting pregnant as a Black woman, I wanted a team around me that made me feel safe,” she said. “I know all about the mishaps that Black women experience.”  

Carter, a therapist and self-described hippie, hired Yvette Perry, a doula and co-founder of Divine Birthing Services LLC in Lancaster. Perry helped Cassandra craft a detailed birth plan. 

“I was worried about postpartum depression. Mrs. Yvette knows a lot about how postpartum affects men as well,” Carter explained. 

Perry was present the day Nyomi was born. She held the baby when Carter or her husband needed a moment and even set up candles in the birthing suite.  

“Whatever I needed for my comfort, she was there,” Carter said of Perry. “She was there as an advocate and voice. I had a really serene birthing experience because I had someone extra who wasn’t tied to me as my family.”  

Perry, a doula for nearly six years, said preexisting conditions, poor communication and dismissive hospital care heighten health risks for Black mothers. 

“Sometimes, Black mommies are not being heard. They don’t know they have rights. They don’t know they can say, ‘no,’” Perry explained. “Doulas empower them. We are there to educate them.” 

Perry’s concerns reflect a broader public health crisis. According to the Centers for Disease Control and Prevention’s 2024 maternal mortality report, non-Hispanic Black women in the U.S. died from pregnancy-related causes at a rate of 44.8 deaths per 100,000 live births. 

In California, Black women experience the highest pregnancy-related mortality rate — about four times greater than other women, according to statistics. From 2021 to 2023, the leading causes of pregnancy-related deaths included cardiovascular disease, COVID-19, hemorrhage, sepsis, amniotic fluid embolism, and pulmonary embolism. 

The Centering Black Mothers in California report found that structural racism — including barriers to high-quality health care, and chronic stress— disproportionately harms Black women. 

In a statement to California Black Media (CBM), the California Department of Public Health (CDPH) said maternal mortality disparities stem from multiple factors. The department said addressing structural racism, listening to Black women’s experiences and reducing provider bias are key to closing the gap. 

California began covering doula care as a Medi-Cal benefit in 2023, providing eligible patients with support during pregnancy, childbirth and the postpartum period, according to CDPH.  

Whitney Dotson of Inglewood wanted an expert on pregnancy, labor, and delivery to guide her and her husband, Anthony, through the birth of their son, Anthony III. So, she hired Perry for doula support. 

“It’s always more comfortable when you can have a second opinion,” she said. “Knowing she was better versed in what the options were, made me more comfortable.” 

Dotson, 39, had a healthy pregnancy but faced recommendations common for expectant mothers over 35. Her doctor advised inducing labor at 39 weeks, but she hoped to carry to full term. 

“I wasn’t comfortable with that,” she admitted. 

Perry provided Dotson with information about induction guidelines and alternatives, helping her understand her options and communicate her preferences.  

Then, Dotson returned to her doctor. 

“I said, ‘I don’t want to — and this is why,’” she recalled. “He agreed and pushed the induction date back a week.” 

Perry also advised Anthony on how he could support his wife during and after the pregnancy and during Anthony III’s birth. She also reminded Dotson to change birthing positions — from her back to her hands and knees.  

Before Saveneh Martinez became a doula with Fierce Advocates in Contra Costa County, she was a new mom, uneducated on aspects of birth, which led to her first child, Colton, being placed in a Neonatal Intensive Care Unit. 

“I didn’t know my choices,” she said.   

Martinez called it “lifesaving” for expecting moms to have a doula.  

“It should be a medical right,” she said.  

California Perinatal Quality Care Collaborative (CPQCC) Senior Associate Medical Director Kimberly D. Gregory said research suggests that doulas decrease the pre-term birth rate and the likelihood of a C-section.  

“Having a doula is a proactive thing to do,” she said.  

Efforts are being made across the state to reduce maternal deaths.  

CDPH’s Title V Action Plan aims to reduce pregnancy-related deaths among Black birthing mothers from 49.7 to 42.3 per 100,000 live births by 2030 through improvements in patient-centered care, expanding community-based perinatal teams, and addressing the social factors that contribute to poor maternal health outcomes. 

CDPH’s Black Infant Health (BIH) Program and Perinatal Equity Initiative (PEI) have already begun to make headway.  

“BIH’s prenatal group model improves key intermediate outcomes for participants, including increased social support and empowerment, better stress management, reduced depressive symptoms and gains in health knowledge and behaviors such as safe sleep practices and reduced smoking,” the CDPH told CBM.  

“PEI’s early implementation results show progress across several participant-reported areas, such as improved birth experiences, breastfeeding initiation, and coparenting skills among fathers and partners,” the CDPH statement continued.  

Gregory said the California Pregnancy Associated Review Committee examines maternal deaths and develops guidelines to help hospitals improve care. One of its main recommendations focuses on how hospitals respond to hemorrhaging, a leading cause of pregnancy-related deaths. 

Gregory said CMQCC also created standard clinic care practices for cardiovascular disease and sepsis, two more drivers of maternal mortality, but widespread implementation across the state is pending.  

She noted that although there are 800 maternal deaths a year in the U.S., there are also 3.6 million births.  

“Most people will do well,” she said. “But you should know about complications like preterm birth. You should know about complications like diabetes, preeclampsia and postpartum depression.” 

Martinez said doulas help to make birthing the transformative experience that it is, instead of a routine clinical transaction. 

“Being able to feel heard, seen, safe, respected, and just being able to create spaces for them to be held as well,” she said.  

Supported by the California Health Care Foundation (CHCF), which works to ensure that people have access to the care they need, when they need it, at a price they can afford. Visit www.chcf.org to learn more.

Continue Reading

Black Press

On Your November Ballot: Prop 38 Would Allocate $8.4 Billion to Immunology and Immunotherapy Funding

“Yes on 38”, with the tagline “Californians for Life-Saving Immunology Research and Cures,” is leading the campaign for the support side of the proposition.

Published

on

Shutterstock
Shutterstock

California voters will decide in November whether Proposition (Prop) 38 should authorize substantial state funding for immunology and immunotherapy research.

The initiative would fund immunology and immunotherapy research aimed at harnessing the body’s immune system to develop new treatments, medical procedures and potential cures for diseases such as cancer, Alzheimer’s disease and heart disease.

More specifically, Prop 38, titled the Immunology and Immunotherapy Research Funding Initiative, is split into three main components that would go into effect if passed.

First, the initiative would authorize the state to issue $8.4 billion in general obligation bonds to support immunology and immunotherapy research. At least half of the bond proceeds, or $4.2 billion, would be dedicated exclusively to research.

Additionally, Prop 38 would make it mandatory for the state to enter into an agreement with a qualified nonprofit institute focused and dedicated to researching immunology and immunotherapy within 90 days of the initiative’s effective date. The research institute must be affiliated with the University of California. 

The third component mandates that the remaining bond revenue must be directed to California-based public and nonprofit medical institutions through a peer-reviewed grant process.  

“Yes on 38”, with the tagline “Californians for Life-Saving Immunology Research and Cures,” is leading the campaign for the support side of the proposition. 

Along with the campaign, organizations that have publicly supported the ballot initiative include the California Democratic Party, The ALS Association, Alzheimer’s treatment and advocacy organizations, California Black Health Network, Parkinson Association of Northern California and Reform California among others.

“California has an opportunity to accelerate lifesaving medical breakthroughs. Immunotherapies work differently than traditional treatments. Instead of attacking cells directly, they empower the body’s own immune system to recognize and stop disease. Today, these therapies are already treating certain cancers and chronic conditions — and researchers continue to expand what’s possible. This initiative invests in proven science so cures can move from the lab to patients faster,” said the campaign.

No on Proposition 38 is leading the campaign against the measure, with support from the League of Women Voters of California. Opponents argue that California cannot afford to assume $8.4 billion in debt for medical research that may not produce definitive results. They also object to directing more than half of the bond proceeds — $4.2 billion — to a single qualifying nonprofit research institute, arguing that funding decisions of this magnitude should be made through the state’s regular budget process.

“Medical research can save lives, but Prop 38 is the wrong way to fund it. It would authorize $8.4 billion in borrowing for immunology and immunotherapy research and require the state to make $500 million to $600 million in annual debt payments for about 20 years. Those payments would come from the General Fund, which also pays for schools, health care, and other public services,” the League of Women Voters of California said.

A “yes” vote would authorize $8.4 billion in state bonds to fund immunology and immunotherapy medical research.

A “no” vote would reject the proposed bond funding.

Continue Reading

Black Press

Two Looming Threats Every Alameda County Elder Should Know About

Federal changes enacted under H.R. 1 are bringing new eligibility, reporting, and coverage rules beginning in 2027. Although Californians age 65 and older and people with disabilities are exempt from the new 80-hour-per-month work requirement and will continue with annual rather than six-month renewals, that does not mean elders can ignore the coming changes.

Published

on

iStock.
iStock.

Alameda County elders are urged to attend the Elder Justice Symposium at Oakland City Hall on Sept. 25, from 9 a.m. to 5 p.m., for information that could profoundly affect both their health care and the legacy they hope to leave their families.

For many older adults, a lifetime of hard work has produced two things they understandably want to protect: access to health care while they are living and the home, savings, and other assets they hope to pass to loved ones when they die.

Changes already underway in California make understanding how to protect both increasingly urgent.

The first threat involves Medi-Cal.

Federal changes enacted under H.R. 1 are bringing new eligibility, reporting, and coverage rules beginning in 2027. Although Californians age 65 and older and people with disabilities are exempt from the new 80-hour-per-month work requirement and will continue with annual rather than six-month renewals, that does not mean elders can ignore the coming changes.

California has already reinstated an asset test for certain Medi-Cal recipients age 65 and older, people with disabilities and those needing long-term care. Assets must be reported when applying or renewing coverage.

And another significant change is coming.

Beginning July 1, 2027, California says the Medi-Cal asset limit for affected beneficiaries will fall from $130,000 for one person to just $21,000, and to $31,000 for two people, with certain assets excluded and special rules applying in some circumstances.

There is more. Beginning Jan. 1, 2027, Medi-Cal’s retroactive coverage period will also shrink. For most beneficiaries outside the ACA expansion adult group, coverage of qualifying medical expenses incurred before application will be reduced from three months to two.

For an elder facing hospitalization, long-term care or an unexpected medical crisis, misunderstanding these rules could have enormous financial consequences.

The second threat concerns what happens to everything you worked so hard to acquire.

Many people believe, “I have a will and a living trust, so my family is protected.”

It may not be that simple.

An estate plan is only as effective as the way it has been structured, maintained and implemented. How assets are titled, whether a trust has actually been funded, beneficiary designations, Medi-Cal eligibility and long-term-care planning can all affect whether a person’s wishes are ultimately carried out.

A will by itself does not automatically avoid probate, and simply possessing trust documents does not mean every asset has been properly protected or positioned to pass as intended.

That is why elders should learn the rules before a medical crisis, incapacity or death makes planning far more difficult.

At the Elder Justice Symposium, experts will explain these changes in understandable language and discuss steps that elders and their families should consider now.

Attendees will have an opportunity to learn what questions to ask about Medi-Cal eligibility and renewals, asset limits, estate planning and protecting the legacy they intend for their families.

Do not assume the rules you learned years ago are still the rules governing you today.

Come to Oakland City Hall on Sept. 25, from 9 a.m. to 5 p.m.

Bring your questions. Bring your family. Most importantly, bring a willingness to prepare.

The decisions you make before these changes take full effect could profoundly affect your health care, your financial security, and what remains for the people you love.

Continue Reading

Advice

Outdoor activities keep you active, but UV exposure can accelerate chronic eye conditions

BLACKPRESSUSA NEWSWIRE — Never underestimate signs of eye problems because if left unaddressed, they can lead to vision impairment or vision loss. Some symptoms should even prompt you to get immediate professional help, as they may indicate emergency sight-threatening conditions.

Published

on

image

Outdoor activities, if done for prolonged periods without adequate ultraviolet (UV) protection, can accelerate eye conditions like cataracts and age-related macular degeneration (AMD). Eye/eyelid cancers are other solar radiation risks of unprotected outdoor time. 

You’d want to implement the above UV vision protection strategies more than ever, as the number of days with high ultraviolet index values is on the rise. The World Meteorological Organization notes that measurements show a significant uptick in the number of days with high UV indices over the past decades.

What Are Some Common Eye Conditions? 

Refractive errors are among the most common eye conditions that result from the eyes being unable to bend (refract) light correctly. They can occur due to certain physical traits, including:

  • The eyeball either being too short or too long
  • The cornea’s shape either being too flat or too steep
  • The flexibility of the lens inside the eye changing as a result of getting older (e.g., the lens becomes stiff due to advancing age) 

Refractive errors are so common they impact over 150 million people in the U.S., per the NEI (National Eye Institute). Some have nearsightedness, also called myopia, while others have farsightedness, also known as hyperopia. In older people, presbyopia, which makes close-up things look blurry, is also prevalent.

Astigmatism is another common refractive error that causes blurriness with both near and far vision. It results from the eyes having an irregular shape (egg or oval shape instead of round). Some people may also have this alongside another refractive error. 

What Are the Signs of Serious Eye Problems? 

Never underestimate signs of eye problems because if left unaddressed, they can lead to vision impairment or vision loss. Some symptoms should even prompt you to get immediate professional help, as they may indicate emergency sight-threatening conditions.

If you, a family member, or a friend ever experiences any of the following, please seek the help of an emergency optometrist, ophthalmologist, or eye hospital right away. 

  • Partial or total loss of sight
  • Sudden double vision
  • A dark curtain, veil, or shadow that moves across the vision
  • A sudden, unexplained increase in eye floaters and flashes
  • Intense pain in and around the eyes
  • Severe redness and inflammation
  • Extreme light sensitivity
  • Physical trauma to the eyes, particularly deep punctures, cuts, or chemical splashes

What Chronic Eye Conditions Can Unprotected Outdoor UV Exposure Cause or Accelerate? 

Spending time in nature doing outdoor activities has become more popular among folks in the U.S., with participation rates increasing over the years.

A new report from the Outdoor Industry Association (OIA), for instance, shows that in 2025, 183.2 million Americans got outside. It represents nearly six in ten people aged 6 and older and reflects an increase of 30 million from 2019’s total participants. 

Nature time and outdoor activities have undeniable health benefits, from lowering stress to supporting better heart health. They can, however, still pose safety risks, particularly if people ignore basic precautions, such as those for outdoor lens safety, skin protection, and dehydration prevention. 

Without proper preparation and long-term ocular protection, your eyes can take a hit from UV overexposure, as this can increase the risk of or accelerate the following eye conditions.   

Cataracts 

Prolonged or consistent exposure to UV rays without any protection can trigger oxidative stress in the eyes. Over time, the sun’s UV light can damage the protein inside your eyes’ lenses. The damage breaks down the proteins and causes them to clump up and form cataracts.

Cataracts are highly common, with the risk increasing with age. The longer they go untreated, the more vision loss they can cause and may even lead to blindness. 

Age-Related Macular Degeneration 

The oxidative stress caused by unprotected UV exposure can contribute to the development or acceleration of AMD. It’s a progressive disease that damages the eyes’ macula (central part of the retina at the back of the eye), blurring central, straight-ahead vision.

Developing AMD can put you at risk of experiencing difficulty:

  • Reading
  • Recognizing faces
  • Driving
  • Completing focus tasks

Eye/Eyelid Cancers 

Prolonged exposure to the sun’s potent UV rays can harm the sensitive areas of the eyes, including the delicate tissues in and around the eyelids. In some cases, this damage can trigger the development of certain cancers. 

How to Safeguard Your Vision From Harmful UV Rays 

Making it a habit to wear sunglasses whose label states “100% UV protection” or “UV400” should be one of your top priorities to protect your eyes from the sun’s UV rays. If you’re not keen on having to switch from prescription specs to sunglasses, don’t worry, as you can get specialty glasses.

You can, for example, fit stylish designer pieces, whether it’s Gucci, Prada, or Versace eyeglasses, with prescription sun care, UV-protective tinted lenses. There are also photochromic (transition) lenses that automatically darken when exposed to UV. 

Wear a wide-brimmed hat to maximize sun protection, too. It can safeguard not just your eyes but also your face and even neck from direct sunlight. 

Frequently Asked Questions

Can You Reverse UV-Related Eye Conditions? 

Some UV-related eye conditions are reversible, such as eye dryness and surface irritation caused by an isolated incident of overexposure to the sun’s rays. Another is photokeratitis, which is similar to a sunburn, except it affects the eyes. 

Resting (moving to a dimmer area) and applying cool, damp compresses to the eyes can help relieve these conditions’ temporary symptoms. 

Many other UV-related eye conditions, however, are chronic or permanent. Cataracts and AMD, for instance, are non-reversible. They are, however, treatable. There’s surgery for cataracts, while AMD’s management often involves injections or laser therapies.

What Is the Most Common Degenerative Eye Disease? 

AMD is the most common degenerative eye disease. 

The latest statistics cited by the American Macular Degeneration Foundation put the number of Americans 40 years and older diagnosed with some form of macular degeneration at 20 million. It further notes that close to 1.5 million people have late-stage, vision-threatening AMD. 

Don’t Let UV Rays Ruin Your Eyesight

UV radiation can contribute to or accelerate various eye conditions, some of which could be permanent, such as cataracts and AMD. It should be enough reason for you to always wear sunglasses with a UV400 or 100% UV protection rating. 

Find more health and lifestyle guides or the latest events and news impacting the Black community by checking out the rest of our platform. 

Continue Reading

Black History

BOOK REVIEW — Curved Air: A Biography of Sickle Cell Anemia and the Quest to Cure the First Molecular Disease

OAKLAND POST — Over decades, researchers worked haphazardly. Papers were written, treatments were tried, used, or discarded. Doctors discovered that genetic testing could prevent new cases, a heartbreak for would-be parents. Researchers discovered that “a perfect storm” of confluence spread SCD: malaria, human population, and mosquitoes.

Published

on

Book Cover of Curved Air
Book Cover of Curved Air.

Copyright: c.2026, Publisher: The Belknap Press of Harvard University Press, SRP: $29.95, Page Count: 338 pages

Four weeks of testing, and you’re exhausted.

Two gallons of blood, maybe three, have been removed. No lie. You’ve laid on tables, slid through machines, been scanned so much you lost count and finally, your doctors have a diagnosis. As in the new book “Curved Air” by Kevin Davies, you have hope there’s a what next?

Though the disease was known in parts of Africa and likely existed here in the United States for hundreds of years, sickle cell disease (SCD) is a relative newcomer in disease research.

Says Davies, “Sickle cell was first identified more than 120 years ago” and it was considered as a “Black disease.” Because of that, discrimination followed “sickle cell warriors” and research was scant, though white people can and do get SCD.

With “agonizing” pain as a major symptom, “SCD is one of roughly seven thousand genetic diseases” currently known to science. When someone has SCD, a genetic mutation causes their red blood cells to curve and get stuck in blood vessels, rather than flowing freely as they should. This diminishes the oxygen supply “to various parts of the body… which causes inflammation and pain,” jaundice, stroke, and damaged organs. Anemia, Davies says, can leave a patient fatigued and short of breath. Anticipating pain crises causes anxiety and PTSD.

Says Davies, “More than forty million people carry” one copy of the genetic mutation that causes SCD, and “five hundred thousand affected” babies are born with the disease per year, worldwide.

Over decades, research was done haphazardly. Papers were written; treatments were tried, used, or discarded. Doctors discovered that genetic testing could prevent new cases, a heartbreak for would-be parents. Researchers discovered that “a perfect storm” of confluence spread SCD: malaria, human population, and mosquitoes.

There was always hope that someday, sickle cell disease might be cured.

Then, Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) gene-editing therapy was approved by the FDA, and a brave volunteer named Victoria Gray stepped forward…

So, you want to – need to – learn more about sickle cell disease? Is it imperative for you? Then, this is your book. But there are things you’ll want to know before you dive into “Curved Air.”

Because author Kevin Davies is the editor of The CRISPR Journal, you can expect up-to-date, cutting-edge information; but that’s a two-sided coin: the information is heavy-duty, not always easy to grasp, and it’s burdened by acronyms that can be overwhelming. Yes, that’ll inform you, but it may also send you elsewhere for further understanding, which really should’ve come from this book.

And yet, if you or someone you love has SCD, this is your book. It explains where the disease came from, why it hasn’t been completely cured yet, and what kind of hope you can hold. It’s a good start on a path to comprehension.

Also, be aware that the narrative here is sometimes padded with journalistic fluff that might annoy you if you’re eager to get to the science. Indeed, “Curved Air” will teach you. Then again, it also might test you.



Continue Reading

Black Press

Prostate Cancer is Twice as Likely to Kill Black Men. Talking to Your Doctor Could Help Save Your Life

BLACKPRESSUSA NEWSWIRE — The American Cancer Society recommends that African American men speak with their doctor at age 45 about whether prostate cancer screening is right for them. Men at even higher risk should have that discussion at age 40, especially those with one or more close relatives who were diagnosed at an early age.

Published

on

American Cancer Society board member Dr. Robert Winn discusses risk factors for the disease and why too many Black men still aren’t getting screened

September is Prostate Cancer Awareness Month, and as both a Black man and a cancer center director, I know many men in our community think it’s bad luck to talk about cancer. But I’m here to tell you it’s bad luck not to talk about it.

We, Black men in the U.S., are nearly 70% more likely than White men to be diagnosed with prostate cancer. We’re also twice as likely to die from the disease.

But I’m telling you, if you’re diagnosed early, you can still enjoy a long, happy life doing the things you love, whether that’s playing with grandkids or staying active in your community. That’s because although it can become a serious illness, most men diagnosed with prostate cancer won’t die from it.

In fact, more than 3.5 million U.S. men who’ve been diagnosed with prostate cancer are still alive today. And when it’s diagnosed early, you boost your odds of survival. It’s that simple.

Generally, prostate cancer is most likely to develop after age 50, but when it develops in Black men, they tend to be younger. That means we need to be on the ball about understanding our personal risk. The risk factors include a family history of prostate cancer and certain genetic health risks that come from a parent.

When it comes to family medical history, we need to get a lot better at talking. For me, it turned out I had uncles who’d died from prostate and other cancers, but I didn’t always know that, so I couldn’t use that information to help me make smarter screening choices.

The American Cancer Society recommends that African American men speak with their doctor at age 45 about whether prostate cancer screening is right for them. Men at even higher risk should have that discussion at age 40, especially those with one or more close relatives who were diagnosed at an early age.

Look, I get that no one looks forward to a screening, but it typically starts with just a simple blood test, called a prostate-specific antigen, or PSA.

Even if you end up needing a digital rectal exam, it takes less than a minute and could save your life. So, what I say to people is, what’s the price of your life? Isn’t it worth a minute of being uncomfortable?

Brothers, this is essential for you to know: just because you’re feeling good doesn’t mean you don’t have early-stage prostate cancer. By the time you start to actually experience symptoms, the disease could be at an advanced stage and might be harder to treat.”

Prostate cancer is significantly impacting our fathers, our brothers, and our sons. That’s why the American Cancer Society is working with health systems and professionals in your community to help remove barriers in the fight against the disease.

We can help you find low-cost or free screening locations. And for men who need cancer treatment, the American Cancer Society can reduce the financial burden of traveling to medical appointments by providing free rides and, if you live far away from where you receive treatment, a free place to stay.

When it comes to prostate cancer screening, one size doesn’t fit all. So, it’s important for all men – and especially Black men – to talk to their doctor about what’s best for them based on their age, risk, and health history. Please make that appointment, because we don’t want you to risk missing out on the best years of your life.

For more information, call the American Cancer Society’s 24/7 helpline at 1-800-227-2345 or visit cancer.org.

Dr. Robert Winn is a nationally recognized physician-scientist and researcher. He currently serves as cancer center director at Temple Health’s Fox Chase Cancer Center. Since 2021, he has served on the board of directors for the American Cancer Society, a leading cancer-fighting organization with a vision to end cancer as we know it, for everyone.

Continue Reading

SIGN UP TO RECEIVE NEWS UPDATES IN YOUR INBOX

Subscribe

* indicates required

Like BlackPressUSA on Facebook

Advertisement

Advertise on BlackPressUSA

advertise with blackpressusa.com

Latest News