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Washington — Soon after Heaven Buchanan celebrated her 10th birthday this year, she was admitted into a Chicago hospital, where she would stay for almost three weeks with severe pain in her arms and legs. 

The pain is all too familiar for Heaven, who enjoys playing with Barbies, jamming to Beyonce's latest hits and making digital art. She is one of the approximately 100,000 Americans dealing with sickle cell disease, a genetic disorder affecting the shape of the red blood cells that can lead to blood flow complications and a range of other painful issues. 

"It was very concerning because her oxygen level stayed low," Heaven's mother, Levella Golden, said about the hospital stay, which included blood transfusions, high-dose pain medicine and supplemental oxygen. "I felt bad as a parent, just seeing her lying like that, and there [was] nothing I [could] do." 

Black Americans like Heaven represent the overwhelming majority of those living with sickle cell disease. Approximately 1 in 365 African American children are born with sickle cell, according to the Centers for Disease Control and Prevention.

When Heaven is in the hospital or has to stay home from school, her mother often has to take time off from the maintenance job that she has had for seven years. But that can make it hard to pay for food or put gas in the car for Heaven's various doctor's appointments, an added stress on top of her daughter's pain.

New federal data obtained by CBS News, as well as interviews with experts, advocates, patients and policymakers, show how one safety net program meant to alleviate that stress has been out of reach for thousands of children who need it most.

"Completely mystified"

Across the country, many families with a child diagnosed with sickle cell disease told CBS News they face a financial predicament like Heaven's mom. Watching over a child in the hospital or staying home to administer pain medication means missing out on paychecks. While Heaven's medical care is covered by Medicaid, the family still racks up related costs, like over-the-counter medicines and therapies.

The federal government has programs meant to alleviate the financial burden that often accompanies long-term medical issues like sickle cell disease among children, including disability payments from a program run by the Social Security Administration, or SSA. The program is known as Supplemental Security Income, or SSI.

In 1990, a landmark Supreme Court case eased restrictions on when children were considered "disabled" and thus expanded eligibility for these payments, bringing the regulations for children in line with those used for adults. The change resulted in more than half of disabled child applicants being approved for assistance, a nearly threefold increase,  according to the National Center for Youth Law.

Social Security disability payments are meant for low-income Americans and can be up to $914 a month, although payments are usually lower, depending on income and household factors.

Dr. Andrew Campbell, the director of the Comprehensive Sickle Cell Disease Program at Children's National Hospital, said the money can help families "on the fringe of poverty and in the middle class meet the additional economic burdens" of dealing with sickle cell disease. 

"In terms of patients and families in pediatrics, there is an unmeasured burden in the clinic from food insecurity and housing insecurity, and a lot of hospital and health care expenses," Campbell said, including small costs that can add up quickly, like transportation and parking. 

Tens of thousands of lower-income families with children suffering from sickle cell disease have applied for the benefits. But roughly 76% of those applicants, or at least 12,249 families, had their requests denied between 2015 and 2020, according to an analysis of federal data obtained through a public records request and shared with CBS News.

Medical experts and legal scholars point to a rule change implemented in 2015 that they say limited access to benefits for children with sickle cell disease. The standards used by the SSA to determine whether a child with sickle cell disease is "severely" disabled are out of line with the current standards used to treat these patients, these experts say. They are still in use today.

"I have been completely mystified by the Social Security disability process," said Dr. Lewis Hsu, a specialist in pediatric blood disorders at the University of Illinois at Chicago and the chief medical officer for the Sickle Cell Disease Association of America. He added that the current Social Security disability standards for kids with sickle cell disease are "out of date" and "probably 15 to 20 years behind the medical standard."

The 2015 rule change

In 2013, the SSA proposed sweeping changes to the requirements used to evaluate "hematological disorders" like sickle cell disease. The agency said the updated requirements were intended to streamline guidance for who qualifies for benefits and how their applications would be judged.

Some of the changes clarified out-of-date terminology that was still on the books since the last time the rules were updated in 1985. Others clarified how the agency treated specific disorders, and the type of documentation needed from patients to qualify for benefits. The changes, the agency wrote, were meant to keep pace with "advances in medical knowledge" and "our adjudicative experience." They took effect two years later, with some adjustments based on feedback gathered during a public comment period.

Richard Weishaupt, a lawyer for Community Legal Services in Philadelphia who argued and won the 1990 Supreme Court case on child disability, said efforts to approve assistance for young sickle cell patients were "pretty successful" up until the 2015 rule change. But in the last several years, he said his office has seen a "shocking" number of denials.

Weishaupt's group filed a public records request with the SSA to obtain the nonpublic data that would reveal just how many children were being denied benefits between 2011 and 2020. The results confirmed the lawyers' suspicions. From 2011 to 2015, the denial rate for child sickle cell cases averaged 62.3%. In the years following the change, the rate soared to an average of 76% over five years. An estimated 1,456 children who would have qualified under the old standards had been rejected under the new requirements.

"The data was one of the most disturbing things that I can remember, because it is so clear that the number of people being denied is much higher than it had been right before the rule [change]," Weishaupt said. "There was no hard evidence that this kind of change in policy was needed, and it shows a level of unfairness and stubbornness that cries out for amending the standards to be more realistic." 

For instance, the SSA now has a specific formula for determining eligibility that takes into account the recency and frequency of when a child was hospitalized. To qualify for benefits, the child must have been hospitalized three times in a year, with each lasting at least 48 hours and occurring at least 30 days apart. The older standards that required a single hospital stay related to the disease within the past year of the disability application.

Hsu, the pediatric specialist, told CBS News there is no medical basis for the new formula. On the contrary, doctors aim "to keep people out of the hospital and find new ways of delivering care, like intense outpatient care," in which patients are able to "go home and sleep in their bed."

"If I'm working to do my best as a doctor, I am trying to keep kids out of the hospitals or trying to shorten their hospital stays," Hsu said. "And then I find out by doing that I have made them ineligible for [disability benefits] when they really have had a hard time of life and they are in and out of school."

"I feel really bad," he added. 

The health of a patient's red blood cells also plays a factor in who qualifies for disability. To be eligible, patients must show they're anemic, a determination made through a test of how much oxygen-carrying hemoglobin is in their blood. But Hsu said modern medications are aimed at raising hemoglobin levels. 

"Your functional status is still the same, and now you are going to get crossed off from Social Security disability, so that would be almost getting punished for having the modern medical treatment," he said.  

The 2015 changes also said opioid prescriptions could be used as a sign that someone is suffering potentially disabling pain. But these powerful pain medications carry their own risks, and Hsu said prescribing them to children is left to the discretion of each doctor and their patients.

Many of the now-pressing concerns about the revised standards were raised to the agency during the public comment period, which elicited lengthy responses in 2015. Several comments, the agency said, "expressed concern that people with hematological disorders may be disabled but their impairments do not satisfy the specific medical criteria in the listings." Others took issue with the criteria themselves, including the hospitalization requirements.

The agency largely dismissed those concerns. The SSA repeatedly pointed to "functional criteria" that it said would allow adjudicators to "evaluate impairments that are difficult to assess in strict medical terms." The criteria were intended as a kind of backstop for those who might be severely disabled but don't meet all the medical requirements. 

Making that determination — whether an applicant qualifies medically or, if not, functionally — is known as Step 3 in the parlance of SSI benefits. Before the 2015 rule change, 41.4% of children with sickle cell disease who made it to Step 3 had their applications approved, according to the SSA data. In the years after the change, the rate dropped to an average of 27.2%.

"You signed in the wrong box"

Levella Golden, Heaven's mom, said she was fired from a previous fast food job for calling out too many times to take care of her daughter. Her applications for benefits have been denied five times, and she said she was surprised to see the SSA cite her income in the denials. Some of the rejections said Heaven's medical paperwork didn't reflect the disability standards for sickle cell disease required by SSA, Golden said. 

"I'm in the lower class and it's really hard living paycheck to paycheck," she said, pointing to steep grocery bills that come with the healthy, organic diet sickle cell patients require. "If my family was rich, why would we try to get Social Security disability? I don't make enough money."

Other denials stemmed from bureaucratic missteps that left Levella infuriated. After Heaven's extended post-birthday hospital stay, Golden said she met with an SSA administrator in Illinois and asked why they were being shut out.

"I asked the man, 'Why are y'all denying her?' He said, 'You signed in the wrong box,'" she recalled. "I felt disrespected. Like, I signed in the wrong box? Are you serious? This is why you all denied her?"

Golden said she asked him where should sign instead. 

"And then they still denied Heaven," she said.

Lisa Thaniel is a social worker at Children's National Hospital who oversees the cases of about 1,400 sickle cell disease patients. She said she wishes SSA had more case managers to help parents navigate the application process. Thaniel said parents have "encountered resistance" when contacting SSA. She said she and a patient recently called an SSA phone line and waited for three hours until someone picked up. 

SSA does not release denial rates for disability claims by disease, so it is unclear how sickle cell cases compare to other medical issues. However, SSA does automatically approve disability payments for some childhood cancers and other rare disorders.

"A path forward"

Lawmakers have been advocating for government support for sickle cell patients and are concerned about the disability application process. Rep. Barbara Lee, a California Democrat who leads the Congressional Sickle Cell Caucus, is calling for action.

"With all of these children that are not able to access these payments, it is just, in many ways, borderline immoral and unethical because it goes counter to what the science and the medical profession has recommended," Lee told CBS News. "It is just outrageous, as I know who these kids are and they are disproportionately Black. It's just wrong and I think [SSA] needs to be held accountable, and I think we need to find a path forward on how to fix it."

Charting that path may now fall to former Maryland Gov. Martin O'Malley, who was confirmed by the Senate to lead the SSA just last week. He is the agency's first permanent leader in two and a half years. The SSA has struggled to retain workers, and consistently ranks as the one of the worst federal workplaces in employee surveys.

Congress could act to adjust how the SSA considers applications, but observers like Weishaupt, the attorney for Community Legal Services, say any change or fix will likely come from the agency itself. Weishaupt has pushed the SSA to review the standards for sickle cell disease more frequently, like it does for other types of disorders.

The standards were initially approved for a five-year window in 2015, and the SSA vowed to "continue to monitor these rules to ensure that they continue to meet program purposes." They have since been extended until 2026.

Asked by CBS News if SSA has reviewed these requirements recently, spokesperson Darren Lutz said, "We research and update our listings for hematological disorders, including [sickle cell disease], for impacts, outcomes, and advancements in treatment." He added that the SSA collaborates on these rules with medical experts and the Department of Health and Human Services.

Lutz also said SSA takes lawmakers' concerns "seriously" and will work to address issues. For his part, O'Malley at his Senate hearing pledged he is committed to addressing SSA barriers for children with disabilities.

Earlier this month, the Food and Drug Administration approved a landmark gene-editing treatment for sickle cell disease, which could be used to repair the gene responsible for the disease.

Back in Chicago, Levella said she will continue to apply for disability to help Heaven and their family's finances. But she's bracing for another SSA denial, even as Heaven spent more days in the hospital during Thanksgiving week. 

"I'm happy to work. I'm going to continue to work. But at the end of the day we still need help, and it's basically like a slap in the face for [SSA] to say, 'You can keep applying, but guess what? We are just going to keep denying you,'" Levella said. 

"It hurts, it melts my heart and it almost made me go into depression. But at the end of the day I have to stay strong for my baby," she added.

Bo Erickson

Bo Erickson is a reporter covering the White House for CBS News Digital.

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