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The Face of Sickle Cell: Kyra and Kami Crawford

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It’s not uncommon for Dana Jones to be in the emergency room. While talking with her for this story, Dana was in the ER with her 19-year-old daughter, Kami Crawford, who suffers from Sickle Cell Disease or SCD.

Kami had a lingering cough and Dana wanted to make sure it didn’t turn into deadly acute chest syndrome before Kami returned to her journalism studies at the University of Texas at Austin.
This ER visit is a part of the lifestyle of the Jones and Crawford family. Dana’s youngest daughter, Kyra Crawford, 17, also suffers from SCD. Dana first found out about her girls’ diagnoses from a letter that the state sent. That prick that babies get in the bottom of their heels when they are first born turned out to be positive first for Kami and then Kyra. Dana and her ex-husband were carriers of the sickle cell trait, which increased the chances for their daughters. The American Red Cross says most people with sickle cell trait do not experience symptoms of the disease.

To help Kami and Kyra lead normal lives they get monthly blood transfusions (sometimes every three weeks) to help prevent sickle cell complications, such as organ and tissue damage, severe pain, and strokes. Together, the girls have already had three strokes.

Dana said in addition to the physical torture her girls go through, the family has endured mental and financial stress. During the pandemic, Dana and her girls joined the Lemonade Circle, which is a leadership group for young girls. On Sept. 17, the Lemonade Circle organized a blood drive to support Kami and Kyra.

“There have been a few times where they both have been in the hospital,” said Dana. “We are always in survival mode and we can’t predict stuff. Every three weeks, I drive to Austin for her blood transfusion to help her get through the next few days.”

Sickle cell disease was first discovered in 1910 when a Black student from Chicago College of Dental Surgery fell sick. When his blood was examined, the red blood cells had a strange shape, like the letter ‘S,’ hence the name. Round red blood cells can travel through blood vessels easily, but the sickle cells become rigid and sticky, which can slow or block blood flow.

Although sickle-cell disorder affects nearly triple times as many individuals as cystic fibrosis, charitable foundations have donated nearly 100 times more money for other disease treatments, like Lou Gehrig’s disease, than donations for sickle cell.

One out of every 366 Black newborns is diagnosed with the ailment, according to the CDC which predicts that sickle-cell disease affects about 100,000 Americans. While 1 in 13 Black or African-American babies is born with sickle cell trait, SCD also impacts Hispanic-Americans from Central and South America, people of Middle Eastern, Asian, Indian, and Mediterranean descent.

There are only a few sickle-cell drugs with FDA approval. However, gene therapy advancements can make sickle-cell disease not only manageable but also curable.
Dana said she calls every few months to check if her girls have moved up the multiple lists they are on for clinical trials.
“We are very much interested, but it’s not that easy,” Dana adds. “A lot of trials start with adults first but now some of these trials have been around for a little bit longer and they are starting to open up to teenagers and younger people.”

Gene editing companies may get an assist from the Biden administration which announced . . .

But Dana admits it’s a long waiting game because one trial that seemed promising abruptly ended when several of the patients were getting different forms of cancer.
So far modifying a patient’s DNA utilizing gene-editing technology seems promising but trials are still ongoing and tracking patients for side effects. The technique’s creators, CRISPR Therapeutics and Vertex Pharmaceuticals reported in June of this year that in the majority of their treated patients, their innovative therapy is alleviating symptoms.

Gene editing companies may get an assist from the Biden administration which announced in August of this year that the FDA recently approved new drug therapies to help patients manage their pain. Through its “Cure Sickle Cell Initiative,” the National Institutes of Health (NIH) is also striving to develop effective genetic therapies and has invited researchers to apply for funding to support large-scale clinical trials.
Along with the NIH, the American Red Cross wants to increase blood donations from Black donors who play a critical role in helping people with SCD since their blood matches up better with someone of the same race. African Americans make up 13% of the U.S. population, but less than 3% of blood donors.
The New York Times featured the sisters last year in its publication and said both girls’ strokes could have been prevented if they were screened and received proven treatment that stops most strokes in children with the disease. Since Kyra and Kami have been seeing a new doctor as of 2019, they are both now getting yearly stroke screenings.

The Times said, “Kyra’s strokes are a striking case study of the broad national failure to provide even the most basic treatments to people with sickle cell. Faulty care and sluggish research are symptoms of what sickle cell specialists say is the deplorable legacy of neglect of Americans with the disease.”
While Kami is now a freshman at UT and was active in playing volleyball and dance in high school, Dana’s youngest daughter, Kyra, spent most of her sixth grade in hospitals and was put in a medically-induced coma for one of her strokes. Kyra is home-schooling and is trying to catch up on her schoolwork to earn her high school diploma.

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Black Life Texas

Thanksgiving A Day of Mourning

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In 1620, the Pilgrims did not bring any thanks when they boarded the Mayflower. Instead, they committed racial genocide. With 102 passengers, the Mayflower set sail in September 1620 to escape religious persecution in their hometown of Plymouth, England. They arrived near Cape Cod after a journey of 66 days and built a village near Massachusetts. About half of the original Mayflower crew perished in their first winter, but in the springtime, a settler brought a Native American named Squanto back to help the remaining colonists. The Pilgrims learned from Squanto how to grow corn, fish in rivers, and avoid poisonous plants. Instead of showing gratitude, it was the beginning of hatred that would endure for centuries.

William Bradford hosted a feast celebrating the first corn harvest and invited Squanto and several Native American allies to join them as a token of appreciation. Because there were no English-styled ovens, the feast was cooked using traditional Native American methods. Most historians use Pilgrim Edward Winslow’s written account of the event as a template for the intricate details of the feast.
Although the feast day was undoubtedly significant, it does not accurately reflect the extent of the colonists’ treatment of Native Americans. They slaughtered a large portion of the Native American population following their lavish feast, destroying their settlements and exposing them to diseases common in England but uncommon in their native land. The beginning of Native American genocide was marked by Christopher Columbus’s 1492 arrival on American soil when he brought diseases and brutality to the Americas. His adventures are documented in his journal, and he referred to Native People in ugly terms. The colonizers made use of their kindness and generosity by killing them. The majority of the Native population was eradicated by settlers or relocated to reservations so their land could be mined for resources.

. . . military officers were fully aware that using small-pox-laced blankets could reduce the Native American population.

Others believe that Thanksgiving began in 1637, when the governor of the Massachusetts Bay Colony, John Winthrop, established a day to commemorate colonial soldiers who had just killed hundreds of Pequot men, women, and children in the area that is now Mystic, Connecticut. The true history of Thanksgiving is frequently not taught in schools, resulting in a generation of children unaware of their history. Unsurprisingly, history is often told from the perspective of the winners. It is uniquely American to observe a holiday centered on gratitude while ignoring the horrifying ways Native Americans were exploited, murdered, and relocated. Remember the Washington “Red Skins” football team – a name that will go down in infamy!

In 1970, Wampanoag leader Frank B. James wrote these words in response to an invitation from the Massachusetts Department of Commerce for his “tribe” to participate in a Thanksgiving event: “This is a time of celebration for you, celebrating an anniversary of a beginning for the white man in America … It is with a heavy heart that I look back upon what happened to my people. Even before the Pilgrims landed [here], it was a common practice for explorers to capture ‘Indians,’ take them to Europe, and sell them as slaves … The Pilgrims had hardly explored the shores of Cape Cod for four days before they had robbed the graves of my ancestors and stolen their corn and beans. … Massasoit, the great Sachem of the Wampanoag, knew these facts. Yet he and his people welcomed and befriended the settlers … This action by Massaoit was perhaps our biggest mistake. We, the Wampanoag, welcomed … the white man with open arms, little knowing that it was the beginning of the end, ….”

Metacomet, the Wampanoag chief’s son, learned from his father’s mistake and rebelled against the English settlers. These English responded by dismembering and beheading Metacomet. They speared his head on a spike in Plymouth and viciously showed it there for a considerable time. This is what they did to enslaved Black people in Louisiana and other areas in America.

In the book Invisible Armies by Dr. Howard N. Simpson, he writes that “The Europeans were able to conquer America, not because of their military genius, religious motivation, ambition, or (even) greed. They used biological warfare to defeat it.” Author J. Leitch Wright Jr. also writes in his book “The Only Land They Knew” that British military officers were fully aware that using small-pox-laced blankets could reduce the Native American population.

The First Nations Development Institute’s spokesperson explained, “Narratives of a harmonious Thanksgiving celebration were created to justify westward expansion and Manifest Destiny.” The “Indian” Removal Act, Senate Bill 102, which President Andrew Jackson signed in 1830, is one of many examples of genocidal terrorism. Due to shootings, beatings, starvation, dysentery, whooping cough, cholera in the summer, pneumonia in the winter, and exposure to extreme weather, approximately 100,000 Native men, women, and children went through the grueling Trail of Tears.” Many of them died on the way. Some of the women that were pregnant were stabbed to death, and some of Andrew Jackson’s men decorated their horses with dead fetuses.

Many African Americans celebrate the 4th of July as a family day and to remember the fight against the slave-owning founding fathers. Many Black folks celebrate Thanksgiving also as a day to unite with family and not for the reasons of hatred as it was originally intended. Does this mean Black folk should not come together on Thanksgiving? We need to unite at all times to celebrate love and family—but never to celebrate genocide or holidays that have been stripped of their true origins. During Thanksgiving, we need to let our children know about the fight against racism and educate them about what happened and how important it is to struggle against racist policies.

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Black Life Texas

Financial Support for Family Caregivers

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Being a caregiver for a loved one is a selfless act. This is the reality for millions of Americans who are now faced with an aging Baby Boomer population who will be faced with more chronic health issues.
In San Antonio with a population of 1.5 million, 17% are aged 60 and over and is expected to grow by about 20% by 2040.

San Antonio resident Cara Pitts has a similar caregiving story of sacrifices. She had a successful career in the healthcare industry when she made the difficult decision to leave her career to take care of her grandmother, Mary Lee, who needed a helping hand after recovering from a stroke. Cara, her husband, and her stepson went from living on two incomes to just one. But Cara soon learned how to navigate her grandmother’s Medicare and Medicaid insurance benefits, which paid for caregiving.

Lost income due to family caregiving is estimated at $522 billion each year. Around 53 million people annually provide a broad range of assistance to support the health, quality of life, and independence of an aging family member, or a loved one who has a disability or chronic health condition. Another 2.7 million grandparent caregivers – and an unknown number of other relative caregivers – open their homes each year to millions of children who cannot remain with their parents. In recent years, additional attention has been given to measuring the financial impact of family caregiving, such as lost wages, reduction in workforce, and the out-of-pocket costs caregivers often incur for meals, transportation, medical supplies, toys, educational tools, home modifications, and more.

When the challenges become overwhelming and family caregivers can’t provide support, the people they care for often are left with no choices except moving to nursing homes and other institutions or to foster care – the cost of which is typically borne by taxpayers. Many caregivers are unaware they can get funded by programs like Medicaid, Veteran Affairs, and Medicare to ease the financial burden.

. . . start seeing income come in about six months after getting the process started (through Medicaid).

“Many families are stressed because they don’t want to put their loved ones in nursing homes or other places and don’t want to leave their careers,” Cara Pitts said. “My grandmother did really well at the nursing home for a few years and became a star resident. The staff even gave her an employee name tag and made her the head of the welcome committee and VIP perks for happy hour. After a few years, the unfortunate reality of nursing home living set in when she saw friend after friend pass away, and Mary Lee became depressed. We knew something needed to change.”

Pitts has since taught other family and friends how to become paid family caregivers and recently started a website and online course (CaregivingFromHome.com) to teach others how to navigate the system. She also co-founded a gourmet plant-based brand Southern Roots Vegan Bakery with her husband Marcus Pitts and even named their best-selling cakes after Mary Lee.

On average, the family and friends that Cara Pitts has helped can start seeing income come in about six months after getting the process started (through Medicaid). She offers a free six-step guide on her website that includes learning about a Home and Community-Based Services Program and checking if some private insurance companies have caregiving benefits for long-term care.

Just recently in September, the U.S. Department of Health and Human Services (HHS), through its Administration for Community Living, released the 2022 National Strategy to Support Family Caregivers. It highlights nearly 350 actions the federal government will take to support family caregivers in the coming year. Some of the recommendations highlighted include incentives for healthcare systems to incorporate caregivers into decision-making for the person receiving care; redesign the Medicaid eligibility process so that the care recipient does not have to deplete most of their assets to qualify for support; allow kin and grandparent caregivers who have primary responsibility for a child to claim the federal Child Tax Credit; and introduce a range of incentives to encourage employers to adopt caregiver-friendly practices, including tax incentives.

This new strategy and report is expected to be a living document and updated every two years, as required by the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act of 2017.
To learn how to get paid as a family caregiver or to ensure you are getting the support you need, sign up and get the free six-step guide.

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Black Life Texas

Untold Stories: Defiance of the Vietnam War

The first American war in which segregation ended was in Vietnam. Black and white troops were separated during World War II and Korea.

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The first American war in which segregation ended was in Vietnam. Black and white troops were separated during World War II and Korea. Nearly four times as many African American soldiers reenlisted as white soldiers at the start of the Vietnam War. African American leaders and organizations such as SNCC, Stokely Carmichael, and Martin Luther King Jr. opposed the Vietnam War by 1967.

An anti-war movement – the GI Movement – changed the course of history. It emerged in the late 1960s. This unique movement took place in aircraft carriers and barracks rather than on college campuses. It thrived in navy brigs, army stockades, and the towns surrounding military bases. It also spread to prestigious military schools like West Point. Additionally, it spread across Vietnam’s battlefields. Nobody anticipated it.

One colonel said it had spread throughout the entire American Armed Forces by 1971. However, the GI Movement against the Vietnam War is still largely unknown today until a documentary film came out in 2005. Rank and file soldiers threw grenades into the officers’ tents and would, at times, shoot an officer on the battlefield that was abusing his men.

SIR! NO SIR!” is the best film about the Vietnam War and the opposition to this war. It tells the brave story of active-duty GIs’ and massive wartime resistance. The entertainment industry, some in the military, establishment historians, and the media have worked to bury this movement and documentary. The true story behind the opposition to the Vietnam War allows us to hear from military doctor Howard Levy, who refused to train Special Forces troops at the beginning of the war. He was eventually court-martialed and imprisoned. We hear from Presidio 27 prisoners who staged a sit-in on the Presidio Army Base in San Francisco in 1968 following the brutal murder of a prisoner by guards who tore down their stockade. After that, they were accused of mutiny, a capital crime.

Additionally, it permits us to hear from “Fort Hood 43” — Black soldiers stationed in Killeen, Texas, who were charged with refusing riot duty at the 1968 Democratic Convention in Chicago. Black Panther leader Bobby Seale and others would be framed for the riot but were later acquitted. The remaining members of the Fort Hood 43 unit were sent to Chicago, but they were kept in their barracks because the leadership was unsure which side they would take if they were forced to walk the streets.

No other war in U.S. history has seen as much scrutiny from the courts regarding its constitutionality. As a matter of constitutional law, this nation’s wars can only begin with a formal declaration from Congress, not the president. Before deploying hundreds of thousands of troops into South Vietnam and successive waves of planes on bombing missions over North Vietnam, Congress had not voted to go to war. President Nixon even lied about U.S. troops invading Cambodia as soldiers crossing into Cambodia realized they were being used. This would eventually lead to the War Powers Act and other measures designed to prevent any president from engaging in wars that are not authorized. This is why President Jimmy Carter pardoned thousands of citizens that refused to be drafted to fight in an illegal war in Vietnam.

Army Private Billy Dean Smith.

The film “SIR! NO SIR!” recounts the narratives of the defiance of thousands of GIs. We learn about the GI prisoners’ weeks-long revolt in Vietnam’s Long Binh Jail (LBJ). Additionally, we know about Army Private Billy Dean Smith. He was accused of fragging his superior, which was the common practice of throwing a fragmentation grenade at aggressive officers, frequently resulting in fatalities. Smith was held in solitary confinement for 20 months and eventually acquitted after a jury of his peers felt there wasn’t evidence to convict him.

The film cites official military analysis as evidence that the U.S. Army in Vietnam could no longer fight. The Vietnamese people were also voicing their disdain for the war. Although the anti-war GIs were literally on the front lines, the millions of Americans who marched and fought in the streets to end the war played their part.

The brave soldiers who stood up to the war were part of a natural movement of working-class and poor people from all over the country, especially people of color. The momentum and inspiration of the movement was the GIs desire to survive, live with dignity, and feel like they weren’t cannon fodder (people just used to kill for unjustified reasons).

In Killeen, soldiers from Fort Hood would go to a Café called the Oleo Strut to hear from returning soldiers who testified that they would be ordered to kill women and children. An “Oleo Strut” is the name of a shock absorber on a helicopter or aircraft. Here in San Antonio, an event against the Vietnam War occurred in which Actress Jane Fonda spoke to hundreds of GIs a block from the Bexar County Courthouse. Some of the soldiers in attendance defied orders not to wear their uniforms, but they did and carried signs and wore buttons that said FTA – which meant “F….k The Army.” Interestingly, Fort Hood is named after pro-slavery Confederate General John Bell Hood.

People who were drafted burned their draft cards by the thousands as many felt that no war except WWII was justified. WWII was against racism and the Nazis. The Civil War was fought to end slavery. There’s also evidence that soldiers threw their medals onto the lawn of the White House out of resentment. The missteps of the Vietnam War led to Vietnam Syndrome,” a term in U.S. politics that refers to public aversion to American overseas military involvement after the controversy over the Vietnam War.
Vietnam Syndrome has caused military authorities to be weary of reintroducing the draft and raising the stakes in a manner that would put them at risk of experiencing the same military collapse as they did in Vietnam.

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