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Ex-NBA Coach Spreads the Word About Rare Heart Disease Affecting Blacks

A defensive specialist, Chaney won an NBA title with the Celtics in 1969 and 1974. After he retired in 1979, he spent 22 years coaching, including 12 years as a head coach in the NBA for the Los Angeles Clippers, Houston Rockets, Detroit Pistons, and New York Knicks.

Published

1 year ago

May 12, 2021

Mia Lane

Don Chaney learned to play basketball while growing up in Baton Rouge, La. He became a skilled baller and played the game at the University of Houston. Then, he went on to have a successful career as a point guard — and later a coach — in the National Basketball Association (NBA).

At 75, when Chaney was retired and ready to settle down and enjoy his newfound leisure when he had to acquire knowledge about an issue that has nothing to do with sports and everything to do with healthy living.

In 2019, Chaney was diagnosed with hereditary Transthyretin Amyloid Cardiomyopathy (ATTR-CM), a rare but life-threatening disease that can lead to heart failure. It disproportionately impacts African Americans.

Now, Chaney looks at raising awareness about the disease as a new style of coaching. He said the rare disease is something that “the average Black family” should take “extremely seriously.”

“It is a process. Every time I have an opportunity to bring it up and spread awareness about the disease, I try my best to do it,” Chaney told California Black Media (CBM) during a virtual interview. “The biggest thing is that the Black community has the highest rate of heart disease in the United States. Doctors are seldom aware of the fact that this particular disease exists. They don’t look for it. So, if you’re not looking for (ATTR-CM) you’re not going to get the correct diagnosis.”

ATTR-CM is an underdiagnosed and potentially fatal disease, according to the American Heart Association, the nation’s oldest and largest voluntary organization dedicated to fighting heart disease and stroke.

The disease is characterized by deposits of amyloid protein fibrils in the walls of the left ventricle, the main pumping chamber of the heart. ATTR-CM, the amyloid protein is made of transthyretin, a protein found in the blood that transports important body fluids.

The amyloid protein deposits cause the heart walls to become stiff, resulting in the inability of the left ventricle to properly relax, fill with blood and adequately squeeze to pump blood out of the heart.

Dr. Kevin Williams, the chief medical officer for rare disease at the biotechnology company Pfizer, says his research shows that ATTR-CM’s symptoms are similar to those of more common causes of heart failure such as fatigue, shortness of breath, and swelling in the lower legs.

He also said that the symptoms are not commonly perceived to be linked to a heart condition —‌ like carpal tunnel syndrome (numbness, tingling, or pain in the fingers), bicep tendon rupture, gastrointestinal issues (constipation, diarrhea, and nausea), and lumbar spinal stenosis (a narrowing of the open spaces in the lower spine).

“All of these factors can lead to delays in diagnosis or misdiagnosis,” said Williams, who is a Black medical doctor. “In the African American community, it’s important to fully explore the underlying cause of these conditions with the help of a cardiologist.”

After his collegiate days at the University of Houston expired, Chaney was selected the 12th pick in the first round of the 1968 NBA Draft by the Boston Celtics. The Houston Mavericks of the American Basketball Association also drafted him that year.

Since 2004, Chaney has relatively enjoyed retirement, but his heart condition was always a concern. Fatigue, palpitations, shortness of breath, and swollen ankles were something he thought was years of physically playing the game of basketball. He learned it was much deeper than the sports.

“I was dealing with all these issues, but I hadn’t really made all the connections,” Chaney told CBM. “I just assumed all the symptoms were from my years of pounding on the floor in professional basketball. I thought it was normal. If I had known this, I could have started treatment earlier.”

While he made numerous visits to the doctors to attend to his medical issues, Chaney said he started to “put the pieces” together after he began to share his family’s past with cardiologists.

Chaney’s mother and grandmother passed away due to heart disease. Back when they were alive, he recalled them complaining about having the same symptoms – fatigue, shortness of breath, swollen ankles and knees – he was experiencing.

“The symptoms are similar,” Chaney said. ‘When you throw in carpal tunnel syndrome along with fatigue and palpitations… that pushes you into another category. So, I had some tests and found out the scary part that it was hereditary. We went on to try to manage it from that point on.”

There are two types of ATTR-CM, wild-type, and hereditary. Wild-type is thought to be the most common form of ATTR-CM and is mostly associated with men over the age of 60.

Hereditary ATTR-CM is inherited from a relative and is due to genetics, affecting both men and women. In the U.S., the most common genetic mutation associated with hereditary ATTR-CM is found almost exclusively in people of African or Afro-Caribbean descent.

It took more than 10 years to receive the right diagnosis despite knowing his family’s history of heart failure and experiencing heart-related symptoms, Chaney said.

“It’s probably because African Americans don’t tell doctors everything that’s going on with them,” he said. “I’m guilty of it, too. They gave me some medicine but that didn’t really help much until they did further testing. It went beyond that. I actually had heart disease. You just have to tell your doctors everything.”

Awareness of ATTR-CM among both patients and some doctors remains low, which in Chaney’s case and many others, could lead to delayed or misdiagnosis. But if symptoms seem unrelated it is best to visit a primary care doctor or an experienced cardiologist to discuss ATTR-CM, Chaney said.

In the United States, hereditary ATTR-CM occurs in African Americans (prevalent in approximately 1 in 25) and in older patients who may be misdiagnosed with high blood pressure-related heart disease.

Chaney said he is “stressed to a degree” because he also has been spending time to get his family into testing mode since the disease is hereditary. His sister’s and daughter’s tests came back negative. He’s still waiting on his sons to go through the process.

“They may not have it. But the disease is still present (in the family) and you could pass it down to your children,” Chaney said he has told members of his family. “I’m still going to press the issues to get them tested.”

While managing his ATTR-CM symptoms, Chaney spends time taking his grandchildren to NBA games in the Houston area. He also restores antique automobiles, participates in horseback riding, and is constantly testing his fishing skills.

His wife, Jackie Chaney, is now his primary caregiver and she is the one that calls the shots, he said.

“I do a lot of things within reason,” Chaney said. “I used to jump out of airplanes. But I don’t do that anymore. My wife monitors my condition, makes sure I see the doctor, and sees to it that I take my medication. I get a lot of help from a lot of people around here. I’m really enjoying my life.”

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Oakland Post: Week of May 18 – 24, 2022

The printed Weekly Edition of the Oakland Post for the week of May 18 – 24, 2022

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13 hours ago

May 20, 2022

Oakland Post

The printed Weekly Edition of the Oakland Post for the week of May 18 - 24, 2022

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Business

Emergency Federal Drought Relief Available

Farmers and ranchers interested in a disaster loan can apply on the USDA website. Small, non-farm businesses, small agricultural cooperatives, and most private nonprofits can apply for the loans by contacting the SBA at 1 (800) 659-2955 or by email. Hearing impaired individuals may call 1 (800) 877-8339.

Published

1 day ago

May 19, 2022

Oakland Post

The Marin County Board of Supervisors voted unanimously May 18, 2021, to declare a local emergency and acknowledge the imminent threat of disaster and the severe effect on dairies and ranchers in West Marin.

Marin and all other California counties to be eligible for assistance

Courtesy of Marin County

As California and the West Coast enter their third year of drought, Marin County and the state’s other 57 counties have been declared primary disaster areas by the U.S. Department of Agriculture. The dry conditions are bad news for Marin’s farmers and ranchers, but the disaster designation status makes available emergency loans for agricultural businesses.

Additionally, the Small Business Administration (SBA) is offering Economic Injury Disaster Loans to non-farm small businesses that do business directly with farmers and ranchers, such as truckers and suppliers of agricultural equipment or services. Eligible businesses may apply for disaster loans through Dec. 8, 2022.

“We want to raise awareness of the financial opportunities this drought designation provides because it may help some of these small businesses hampered by our continuing severe drought conditions,” said Marin County Agricultural Commissioner Stefan Parnay.

The federal commitment to assist businesses because of drought-related hardship extends to 23 other western states in addition to California. Small non-farm businesses, small agricultural cooperatives, and most private nonprofits of any size may qualify for SBA Economic Injury Disaster Loans to help meet financial obligations and operating expenses that could have been met had the drought not occurred.

In July 2021, the State of California added Marin to its list of counties falling under its state of emergency for drought and record-breaking high temperatures statewide. Governor Gavin Newsom made the drought official in 50 of the state’s 58 counties. Since then, state agencies partnered with local water suppliers to promote conservation tips through the Save Our Water campaign.

The Marin County Board of Supervisors voted unanimously May 18, 2021, to declare a local emergency and acknowledge the imminent threat of disaster and the severe effect on dairies and ranchers in West Marin. It also made the County eligible for California Disaster Assistance and other forms of state funding and resources. The local declaration cleared the way for state authorities to aid response and recovery efforts available to the County, water suppliers, farmers, impacted businesses and residents.

Marin Water, the municipal water district serving the majority of water customers in the county, and the Novato-based North Marin Water District (NMWD) are staying in contact with the County about drought conditions. Both water districts have declared water shortage emergencies and enacted mandatory conservation measures. Marin Water serves more than 191,000 customers in central and southern Marin. NWMD serves a customer base of about 64,000 in and around Novato and parts of coastal West Marin. For localized details, see the water rules webpages for Marin Water and NMWD.

Marin residents have been asked to support local agricultural producers who have been affected by the drought right on the heels of the COVID-19 pandemic. In 2021 numerous Marin ranchers had to import water by truck to keep their animals alive while also reducing their herds. With far less vegetation for grazing because of the ongoing drought, animals are eating imported feed shipped from other states at extremely high costs to the ranchers. Additionally, a few Marin crop producers had to import water by truck to keep crops alive and fallowed approximately 150 acres, or about 50% of the 300 crop acres in the county.

“As the region enters its third year of drought, this season is going to take a significant toll on our agricultural industry,” Parnay said.

The Board of Supervisors last year approved $150,000 in drought relief funds for the agricultural industry and another $250,000 for general drought relief needs to augment other state and federal aid.

Antonio‌ ‌Ray‌ ‌Harvey‌

California Will Be First State to Break Down Black Employee Data by Ethnic Origin

Recently, disaggregation of Black data has been a top priority for some Black lawmakers and advocates supporting reparations for Black descendants of American slavery in California. In January, Assemblymember Chris Holden (D-Pasadena), introduced AB 1604, the Upward Mobility Act of 2022, legislation that will require the state to breakdown the data of state employees by ethnic origin.

Published

1 day ago

May 19, 2022

Oakland Post

Disaggregated data refers to the separation of compiled information into smaller units to clarify underlying trends and patterns.

By Antonio Ray Harvey, California Black Media

When Gov. Gavin Newsom presented the annual May revision of his budget proposal for the next fiscal year, he announced that California will establish new demographic categories when collecting data pertaining to the ethnic origin of Black state employees.

Kamilah A. Moore, the chairperson of the California Task Force to Study and Develop Reparation Proposals for African Americans, said the breakdown of data is “amazing news.”

“California will become the first state in the nation to disaggregate data for its Black population by ancestry/lineage,” Moore posted on her Twitter page on May 13. “This will assist the task force in our efforts to develop comprehensive reparations proposals for descendants.”

Disaggregated data refers to the separation of compiled information into smaller units to clarify underlying trends and patterns. Newsom’s actions are similar to a bill authored by then-Assemblyman Rob Bonta.

In September 2016, former Gov. Jerry Brown signed Assembly Bill (AB) 1726 into law that required the state Department of Public Health to separate demographic data it collects by ethnicity or ancestry for Native Hawaiian, Asian, and Pacific Islander groups.

The Assembly Committee on Appropriations is currently reviewing the bill.

AB 1604 promotes mobility for people of color in California’s civil services system and requires diversity on state boards and commissions. Newsom vetoed AB 105 last year, the legislative forerunner to AB 1604, which Holden also introduced.

Shortly after he was appointed chair of the Assembly Committee on Appropriations in January, Holden reintroduced the legislation as AB 1604.

Holden, a member of the California Legislative Black Caucus, said AB 1604 will give the Reparations Task Force more accurate data to utilize in its study and deliberations. The bill was passed by the Assembly Committee on Public Employment and Retirement on March 14.

In a written statement released in October last year, Newsom said he vetoed AB 105 because “the bill conflicts with existing constitutional requirements, labor, agreements, and current data collections efforts” but found disaggregation useful for dissecting data about California’s workforce.

As stated in his 2022-2023 May revision of the state budget, under the section titled “State Workforce Demographic Data Collection,” Newsom proposed the separation of Black employee data beginning with the state’s 2.5 million-plus employees.

The Department of Human Resources (CalHR) will work with the State Controller to establish new demographic categories for the collection of data pertaining to the ancestry or ethnic origin of African American employees.

The collection of this data, the document states, “continues CalHR’s duties to maintain statistical information necessary for the evaluation of equal employment opportunity and upward mobility within state civil service.”

In March, the nine-member Task Force to Study and Develop Reparations Proposals for African Americans decided with a 5-4 vote that lineage will determine who will be eligible for reparations.

The May revision also includes $1.5 million in funding for the Department of Justice to continue supporting the work of the Task Force to Study and Develop Reparations Proposals for African Americans

Supporters of disaggregation say it will serve as a key tool for the task force as it enters its second year of studying slavery and its lingering effects on African Americans.

The state’s reparations task force will recommend what compensation should be and how it should be paid by July 2023.