The last time Jennifer Feldman, R.N., saw Derick, * a then 20-year-old with severe hemophilia A, he asked for help to turn his life around. It was late March 2021, and Derick was in the emergency room once again — not for his bleeding disorder, but because of the mental health and substance use disorders he had struggled with since his teens.
“His last ER experience really scared him. He knew this was an uphill battle. The only difference was, this time he was actually ready to get the help he needed,” says Feldman, nurse coordinator for the New England Hemophilia Center at UMass Memorial Medical Center in Worcester, Massachusetts.
At the time, the inpatient psychiatric care beds at UMass Memorial, where Derick had been hospitalized before, were full. Feldman called other rehab facilities throughout central Massachusetts. The ones with openings refused to take Derick.
“I was told that it was not something that they could do because having a patient who required infusions or injections is a liability to them,” Feldman says. After Derick’s death, Feldman sounded the alarm to the National Hemophilia Foundation and other bleeding disorders organizations. Could other teens and adults with bleeding disorders be denied inpatient mental and behavioral health care because they need factor infusion?
Despite Feldman’s best efforts to get him round-the-clock care, by early August 2021 Derick had died from his substance use disorder. Having hemophilia had kept this “big teddy bear,” as Feldman described him, from getting the inpatient care that was his best hope for long-term recovery.
“Derick was discriminated against because of his underlying condition. I thought this can’t be an isolated incident. And sure enough, it certainly wasn’t,” Feldman says. (See below, “Changing Access to Mental and Behavioral Health Care.”)
Like Feldman, Gillian Schultz, director of programs for the Bleeding Disorders Foundation of North Carolina, has faced roadblocks to inpatient care for her 11-year-old son, who has struggled with attention-deficit/hyperactivity disorder and a mood disorder since he was 5.
Two years ago, after an emergency hospital stay, doctors recommended that Schultz’s son receive inpatient care. Knowing such facilities are often fully booked, Schultz tapped her connections. Even when she could find an opening, her son’s hemophilia tripped an automatic denial. Her hemophilia treatment center (HTC) social worker and nurse made calls and wrote letters. “Nobody was able to help,” she says.
Schultz’s son was eventually placed in a weekday day program. “They would accept him there because he didn’t need infusions while he was there,” Schultz says. “But it was not an ideal situation because he needed a more intense level of care. And he fought with us when it was time to go each day.”
Day programs are a transitional step after someone reaches stability with inpatient care. Without inpatient care, it took her son nearly a year for his mental health to stabilize, says Schultz, who worries about what may happen as he gets older.
Schultz’s experience prompted her state bleeding disorders chapter to launch a mental health initiative. Its subsequent survey of people with bleeding disorders across North Carolina found that 37% of 11- to 19-year-olds deal with a mental health issue. Schultz, who develops programs for teens at her chapter, wasn’t surprised by the findings.
A Nationwide Mental Health Emergency
Derick’s and Schultz’s stories illustrate the escalating mental health crisis among the nation’s children and adolescents — and the extra hurdles that people with bleeding disorders face when seeking care.
According to the Substance Abuse and Mental Health Services Administration (SAMHSA), 15.7% of adolescents ages 12 to 17 experienced a major depressive episode in 2019, up significantly from 8.1% in 2009.
Of these, 11.1% experienced a depressive episode so severe that it interfered with their school, home, and social lives. By comparison, 5.8% of teens in 2009 reported having major depression with such severe impairment.
The COVID-19 pandemic placed additional mental health burdens on children and teens. According to the Centers for Disease Control and Prevention, 37% of high school students in 2021 reported experiencing poor mental health during the pandemic. In the 12 months before the survey, 44% had felt persistently sad or hopeless.
Among her child and teen patients at Rush Hemophilia and Thrombophilia Center in Chicago, Lucy Ramirez, MSW, LCSW, has seen the mental health effects of living through the pandemic. “A lot of them were not happy about virtual learning. That was the main impact,” she says. “Some of them seemed to give up on it. They became more depressed and more anxious about that aspect.”
Missing out on milestones such as school dances and graduation also affected kids’ mental well-being, Ramirez says. And even returning to school proved difficult for some. “They were kind of out of practice being with friends and socializing again,” she says.
For children and teens who already had depression, lockdown and isolation measures compounded their symptoms, Ramirez says. “More of the adolescents that we work with were a bit more withdrawn socially,” she says. “They were having a harder time communicating with their family members, and with their friends especially.”
Ramirez also saw an uptick in teens and young adults not following their normal prophylaxis schedules. “They weren’t doing anything or going anywhere, so they didn’t feel the need to treat,” she says. “But doing a deeper dive into what those emotions were, it was an overall neglect of self-care.”
Like many who struggle with mental health and substance use disorders, Derick stopped taking care of his physical health, often missing his HTC appointments. A change in physical health, appearance, and hygiene are often signs of depression and other mental health issues, says Denise Lowery, LCSW, who works with teens at the UC Davis Hemostasis and Thrombosis Center in Sacramento, California.
Safeguarding Your Child’s Mental Health
The sooner children receive treatment for a mental or behavioral health issue, the better their chances at managing the disorder and preventing it from getting worse. That’s why it’s important to recognize how widespread and interconnected these issues are for children and teens.
Like Schultz’s son, mental and behavioral health issues can start well before the teen years. One in 6 U.S. children ages 2 to 8 has a diagnosed mental, behavioral, or developmental disorder, according to the CDC.
The latest data from the National Survey of Children’s Health found that 22.6% of children ages 3 to 17 had at least one reported mental, behavioral, emotional, or developmental problem or needed a related screening. As they enter their tween and teen years, diagnoses of ADHD, depression, and anxiety increase, according to the CDC.
Before prophylaxis treatment became available, Lowery says her patients experienced more anxiety and depression related to their bleeding disorders.
To help kids and teens maintain their mental health, HTC social workers and nurses often recommend that parents encourage them to participate in programs offered through NHF, their local chapters, and other organizations. At the height of the pandemic, many of these events took place virtually. Bleeding disorders summer camps — which help kids and teens feel a sense of belonging — went remote.
Schultz’s son, who looks forward to summer camps every year, refused to go to virtual camp. She’s seen a change in his attitude for the better since he could attend in person this year.
To get teens to connect during the pandemic, Lowery held a virtual teen group. “They were chatting, playing their video games, and I think it was really helpful for them to just talk about nothing, because they were just interacting,” she says.
Advocating for your child’s mental health needs is as important as advocating for care for their bleeding disorder, Lowery says. While she’s seen an increase in anxiety and depression among children and teens, Lowery says that may be the result of feeling more comfortable talking about mental health issues now than in the past. When they don’t talk about it, she says, children and teens struggle with these issues longer than necessary, simply because it takes so long to get a diagnosis and then treatment.
For parents who are concerned about their child’s mental health, Lowery recommends first reaching out to their HTC social workers and nurses.
And because mental health issues can strain parents and families, Schultz advises parents to focus on their own self-care. “Seeking community and support from others who are in similar situations — especially for parents — is really important, too,” she says.
As was the case with Derick, substance use disorder often coexists with mental illness. According to SAMHSA, nearly 3% of adolescents ages 12 to 17 struggle with both major depression and substance use disorder (illicit drug or alcohol use or both).
Often, teens will use drugs or alcohol as a coping mechanism. Experiencing a major depressive episode increases the chances that teens will use illicit drugs. The most recent SAMHSA data from 2020 found that 28.6% of adolescents ages 12 to 17 who had a major depressive episode reported using illicit drugs within the past year, compared with 10.7% of those with no such episodes.
Feldman says she wishes she could have done more for Derick, who wanted to go back to college to study forensic science. He had attended college briefly in 2018 on an academic scholarship.
“He was just a really nice kid, super smart. He definitely could have gone places,” Feldman says. “You just never think you’ll run out of time.”
*HemAware is using Derick’s first name only, out of respect for patient confidentiality.
Changing Access to Mental and Behavioral Health Care
Concerned that people with bleeding disorders are being denied critical care for their mental health and substance use disorders, the National Hemophilia Foundation joined with the Hemophilia Federation of America, local bleeding disorders chapters, several hemophilia treatment center (HTC) nurses and social workers, and community members to form the Bleeding Disorders Substance Use and Mental Health Access Coalition. Gillian Schultz and Lucy Ramirez both serve on the coalition.
To get a handle on the problem, the coalition conducted a nationwide survey of HTC doctors, nurses, social workers, and staff. The results were sobering: 78% of those who had tried to secure placement for their patients at a mental health or substance use residential treatment facility had been denied care. They often came across outdated concepts of what it means for someone to have a bleeding disorder and concern over infusion needles being used for substance use or self-harm.
“We found that it was an issue across the country,” says Kate Reinhalter Bazinsky, MPH, the coalition’s chair and a board member of the New England Hemophilia Association. “We had cases in 16 different states, and we had 28 different individual provider reports of this happening. And often the providers had multiple patients who had been denied care.”
The American Society of Addiction Medicine (ASAM), which sets admission criteria for substance use treatment centers, is expected to release new guidelines in 2023. So, the coalition decided to tackle substance use care first, says Bazinsky, providing its own set of recommendations in hopes of addressing concerns and misinformation over admitting people with bleeding disorders. Because it’s not an accrediting organization, ASAM can’t force facilities to implement the guidelines, but many states incorporate ASAM’s criteria into their regulations, so it’s an important step to get the organization to rethink its policies, Bazinsky says.
“Basically, we defined what medical stability means for a bleeding disorders patient. They are safe within an inpatient facility as long as they have the ability to infuse, they have access to their medications, and there’s somebody to monitor them during the infusion,” Ramirez says. To make sure its proposed recommendations to ASAM passed medical muster, the coalition submitted them to NHF’s Medical and Scientific Advisory Council (MASAC), which drafted a letter to ASAM endorsing the group’s work.
Through the survey, the coalition also learned what worked for providers who were able to get their patients into residential mental health and substance use facilities. The coalition developed these best practices into a resource guide, which providers received in August during NHF’s Annual Bleeding Disorders Conference. “It gives providers a blueprint for what they should say and not say when talking with facilities to maximize their chances of getting residential care for their patients,” Bazinsky says.
In the meantime, if you or your child needs residential mental health or substance use services, don’t give up, Ramirez says. “We have had some patients who have been successful getting treatment for substance use on their own, who made the calls to get into rehab. One adult was even able to bring his infusions to treat himself. So, it can be done,” she says. “But we’re trying to increase those success stories so that all people with bleeding disorders are able to get into treatment when they need it.”
If you or your provider has been denied access to inpatient mental health or substance use care, the Bleeding Disorders Substance Use and Mental Health Action Coalition wants to hear from you. Email [email protected], or contact Marla Feinstein, NHF’s senior policy and healthcare analyst ([email protected] or 212-328-3734) or Mark Hobraczk, senior manager for policy and advocacy at the Hemophilia Federation of America ([email protected] or 813-965-2127).