Long-term survival of monkey with transplanted pig kidney offers hope in alternative organ search: Scientists

eGenesis

(BOSTON) — Harvard-affiliated scientists say they have been able to keep a monkey alive for two years with a genetically engineered pig kidney. Although preliminary, transplant experts say this research is an important milestone in the search for an alternative source of organs.

Scientists are hopeful that one day, genetically modified organs grown in pigs may be able to significantly extend the life of people with end-stage organ failure.

In recent months, other high-profile research teams at New York University and the University of Alabama at Birmingham announced successful transplants of genetically modified pig-kidneys into brain dead human donors. But those experiments ended after a few weeks.

“Duration of survival has been an Achilles heel of genetically modified pig organs to date due to a combination of rejection and opportunistic infections,” said Dr. Peter Chin-Hong, director of the transplant infectious disease program at University of California, San Francisco.

This new research, published in Nature, represents the longest period of time that scientists have been able to keep a non-human primate research animal alive.

“This proof-of-concept study provides real hope that transplantation of porcine [pig] donor kidneys into humans is very much on the horizon,” Chin-Hong said.

Still, experts cautioned that this new research was preliminary, and the idea of pig-grown organs is likely several years away from becoming a reality.

“If ultimately proved successful in human organ recipients – which is still years away at this point – this could be one of the key advances needed to make xenotransplantation a reality in clinical practice,” said Dr. Josh Levitsky, president of the American Society of Transplantation.

The new research was led by eGenesis, a company co-founded by Harvard geneticist George Church. In a press release, scientists at eGenesis said the new research will help lay the groundwork for formal clinical trials.

In prepared remarks, eGenesis CEO Michael Curtis, PhD, said the company is focused on “improving long-term survival for transplant recipients from months to years.”

Eventually, the hope is that transplant doctors will be able to use genetically modified pig organs instead of solely relying on deceased human organ donors.

“Among all solid organs transplanted, kidneys are most sought after, expected to increase in demand further, and there is a significant shortfall of organs leading to premature deaths,” Chin-Hong said.

Every day, 17 people die waiting on the organ transplant list, according to the Health Resources & Services Administration. There are currently more than 100,000 people waiting on the national transplant list and a new person is added to the list every 10 minutes.

Copyright © 2023, ABC Audio. All rights reserved.

Why safe spaces in health care matter for LGBTQ+ patients

Alexander Spatari/Getty Images

(NEW YORK) — Andrew, a 39-year-old New Yorker who identifies as queer, says he got lucky with his first primary care provider, who was very queer friendly.

“He was straight, but raised by two dads and created a very welcoming environment,” Andrew told ABC News of his former doctor.

When his doctor moved, Andrew says he realized how much it mattered for his health. He says his new doctor was less comfortable around queer issues. “There was always a barrier and a sense of awkwardness,” he said.

Andrew says the lack of good communication left him feeling he could not tell his doctor everything. “Having experienced queer friendly doctors and not queer friendly doctors you see the importance of nonjudgment,” he said.

Being able to have open conversations about sexual identity can be important for health care, experts say, especially around issues like appropriate general health, STI, and mental health screenings.

The LGBTQ+ community disproportionately experiences barriers to health care, and studies have shown this can lead to worse health outcomes stemming from things like untreated depression or anxiety, unaddressed cardiovascular health risks, or missed vaccines that can prevent infections or even cancer.

But many members of the LGBTQ+ community don’t feel able to talk openly with their doctor. In one study, 39% of bisexual men and 33% of bisexual women reported that they had not disclosed their sexual identity to their medical provider, often for fear of stigmatization or judgment.

Some members of the LGBTQ+ community fear discrimination and others have reported being denied care by health care providers solely due to their sexual orientation or gender identity. The fear of outright discrimination and implicit bias can deter people from seeking care, making them less likely to complete recommended health screenings, research shows.

“Some of the barriers are about access and some are about willingness to engage with the health care system,” says Dr. Renee Crichlow, vice chair of health equity for the Department of Family Medicine at Boston University Medical School.

Dr. Crichlow also notes a big issue is that LGBTQ+ individuals are less likely to have a consistent source of primary care. This is why women in the LGBTQ+ community are significantly less likely to access preventative health care than other women, according to a study in the Journal of Urban Health. After adjusting for other factors, these women were ten times less likely to have received a timely pap test and four times less likely to have received a timely mammogram, the study said. This likely contributes to higher rates of various cancers in that community, as another study indicated.

Health providers can take steps to address disparities and lessen these barriers, and many are. Providers can implement intentional strategies to recognize and overcome implicit biases. This includes asking patients open-ended questions without assumptions or judgment. “If people don’t feel comfortable in a healthcare environment, you have to create a very overt atmosphere of safety,” Dr. Crichlow says.

For patients, there are resources that can assist in finding health care providers who are LGBTQ+ affirming, like GLBT near me and GLMA: Health Professionals Advancing LGBTQ+ Equality. And Dr. Crichlow’s advice is to use the community as a resource, “Check with your friends and colleagues. Do they have a trusted clinic they can go to?”

And bring a friend: “You don’t have to do any of these things alone and there are lots of people willing to engage in a compassionate supportive way with the LGBTQ+ community. If the first clinic doesn’t work for you, trust me, there is another place out there for you,” Dr. Crichlow says.

Patients could also try having an open conversation with their current doctor, says Alex Sheldon, executive director of GLMA: Health Professionals Advancing LGBTQ+ Equality. “Express your concerns, feelings, and discomfort in a respectful but firm manner. Your provider may not be aware of your concerns and addressing them directly can lead to improvements in your relationship,” Sheldon says.

If people don’t feel comfortable with their current doctor, they may be able to use telehealth for some services, Sheldon says.

In addition, LGBTQ+ youth dealing with depression or anxiety can reach out to the Trevor Project crisis help line. Individuals in the transgender community can reach out to the Trans Lifeline peer support hotline to be connected with resources, including mental and health care services. Finally, Sheldon notes, people can reach out to patient advocacy groups or support networks to learn more about your conditions and treatment options.

Even after finding a doctor they are comfortable with, LGBTQ+ patients don’t always know what issues they should bring up. GLMA provides resources to patients about things to remember to discuss with your doctor. These include things that all patients should discuss, like concerns about screenings, heart disease risk factors, diet and exercise. But there is more to consider for people in the LGBTQ+ community, including risks for intimate partner violence, PREP for HIV, and screening for depression and anxiety.

There are also things that trans patients should bring up, including questions about side effects or drug interactions with hormone therapy.

As for Andrew, he says he has again found a doctor he can trust, and says it makes all the difference. “Every time I go into the doctor now, we have a good conversation, and it helps me feel at ease because it’s not just a sterile environment, it’s a place of trust,” he says.

Dr. Elizabeth Ghandakly, MD JD, is a resident physician in Internal Medicine from The Cleveland Clinic in Ohio and a member of the ABC News Medical Unit.

 

Copyright © 2023, ABC Audio. All rights reserved.

Amid nationwide mental health crisis, suicide prevention hotlines struggle with repeat callers

xijian/Getty Images

(NEW YORK) — Things at Family Services of Northeast Wisconsin have not slowed down since July 2022.

The center, which runs the 988 crisis hotline for the state, worked hard to expand its mental health services following the hotline’s national relaunch. Like many centers across the country, they have has experienced surging demand that has outpaced anything experienced prior, Shelly Missall, the organization’s 988 program manager, told ABC News.

That level of surging demand has led Missall to make tough decisions. She says among them: limiting services provided to frequent users of the line.

“Restricting callers is not ideal for anyone,” Missall said. “But given the extent of the demand, and the state of their staffing, few choices remain.”

“We’re looking at our needs as a call center, to be able to meet the needs of the entire state and to be able to get to the…other folks who need help,” she added.

Since its launch in July 2022, demand for 988 has swelled. As of September 2023, five million individuals had received support by calling, texting or messaging the line. During that time, the federal government has invested nearly $1 billion into the hotline, including specific subnetworks for veterans, LGBTQ+, Spanish speakers and users of American Sign Language designed to meet each group’s distinct needs.

In the face of widespread staffing shortages amid the ballooning demand, 988 centers all over the country are being forced to make these same tough decisions for frequent callers, sources informed ABC News.

988 Suicide & Crisis Lifeline

According to Vibrant Emotional Health, the national organization administering the new 988 hotline, crisis centers across the country are using callers’ names, numbers or even “the sound of their voice” to potentially limit services.

“Based on our policy requirements, centers are able to determine for themselves how they want to address familiar voices,” Divendra Jaffar, a spokesperson for Vibrant, told ABC News.

In an ideal world, the goal of a crisis hotline is to stabilize symptoms—not provide ongoing care—according to Tia Dole, 988 lead at Vibrant. But experts say that restricting callers goes against best practice for mental health care in a world where non-crisis care—like regular therapy—is hard to come by. With waitlists stretching into the hundreds —and wait times of weeks or months—988 is the backstop.

Yet, centers are struggling to be that backstop for recurrent users while also staying available for everyone.

In response to this reporting, the Substance Abuse and Mental Health Services Administration (SAMHSA) said it is now working with Vibrant, and in turn local centers, to evaluate the need for restrictions on frequent callers and develop alternatives to those measures.

“Even with familiar callers, each contact is unique and crisis counselors use their experience to listen, support and connect people to various types of community-based care, if needed, while [also] making sure they are able to respond to incoming calls,” Monica Johnson, SAMHSA’s 988 director, told ABC News.

Difficult trade-offs

According to data from Vibrant, at least 1,000 callers across the country have been flagged as familiar voices. Centers in 39 states have consulted with Vibrant about placing restrictions on frequent callers, Jaffar told ABC News. The organization declined to share additional statistics or resources for determining how frequent callers are managed.

While a frequently asked questions page on SAMHSA’s website states that the line is “confidential,” that does not preclude cataloging callers’ phone numbers, names or the sound of their voice in order to identify frequent callers, Jaffar said.

Vibrant also does not have a universal definition for “familiar voices,” he added, “so some centers may identify an individual as being familiar to them with relatively few contacts, while others…may have a higher threshold.”

Family Services of Northeast Wisconsin has restricted frequent callers in various ways, Missall said. In some cases, they’re limiting calls to 20 minutes each, in others, they’re limiting individuals to 3 calls over a certain period of time and for some, they’re referring callers out to other resources such as a National Alliance for Mental Illness “warmline,” before terminating the call. Such non-crisis helplines are typically less equipped to respond to emergency situations, according to the American Psychiatric Association.

“Some of those boundaries might be necessary to help them build some of their own personal skills as far as being able to self-manage,” she said, “it’s never healthy for somebody … to become too overly dependent on any singular resource.”

Leading mental health professionals disagree that such an approach is likely to help patients.

“I am aware of no evidence that restricting crisis mental health services leads to positive outcomes,” Mark Olfson, a psychiatrist at Columbia University and former chairman of the scientific advisory committee for the American Psychiatric Association, told ABC News.

If resources are limited, “some mechanism may unfortunately be needed to ration care,” he acknowledged. But an inherent challenge persists in determining who needs care first, and whether calling frequently means each call is less serious, Chinmoy Gulrajani, a psychiatrist at University of Minnesota and medical director with the state’s Department of Human Services, told ABC News.

Tia Dole, at Vibrant, said that the organization encourages call centers to ensure a safety plan is in place and to coordinate other follow-up care when possible.

“[But] boundaries need to be set for a certain group of people,” Dole added, “and that’s the reality of running a crisis center.”

Nowhere else to go

Experts say there are ways to help frequent callers other than restrictions alone, which SAMHSA says it’s helping to roll out.

One approach involves developing specific protocols for brief, recurring check-ups with frequent callers, Madelyn Gould, a professor of psychiatry at Columbia University whose research informed the 2020 law inaugurating 988, told ABC News. Another strategy includes using peer supporters—a historically underutilized group of behavioral health workers who have been largely excluded from the 988 rollout—to staff hotlines devoted specifically to familiar callers.

These pathways, using 988 centers to direct those in need to additional follow-up care, would be consistent with SAMHSA’s 2020 guidelines on crisis care. But until that process is readily available, advocates worry about the effect restrictions may have on those in need.

Ellen Dayan, for one, is concerned.

Dayan herself has faced an enduring battle with mental illness time and time again, after a diagnosis of bipolar disorder in her twenties, she’s found herself relying on strangers on the other end of a telephone for support in moments of crisis, including suicidality.

Later, she took on the role herself, answering calls for a Toledo crisis prevention center, Help Network of Northeast Ohio. Dayan’s own experience with calling the helpline left her appalled when she was increasingly pressured by management to restrict services offered to repeat callers. They were only to be allowed a certain number of calls per week, or for a certain duration per call.

“The attitude was … that they’re clogging up the lines,” Dayan said, “but that’s a problem, you have to sustain those relationships because otherwise it’s just a slamming door.”

Help Network of Northeast Ohio did not respond to requests for comment.

Dayan said she tried to do what she could amid the restrictions, she had a list of roughly three dozen local mental health organizations that she’d distribute to callers to get plugged in. But those would often have months-long waitlists if they’d take her callers at all.

Which meant for many of those callers, 988 was the only option left.

In those cases, Dayan said, “a conversation — that’s all we have.”

If you or a loved one is struggling with a mental health crisis or considering suicide, call or text 988.

ABC News is looking into challenges and successes with implementation of the 988 Suicide and Crisis Lifeline. If you have had issues or successes with the line, please contact us here.

 

Copyright © 2023, ABC Audio. All rights reserved.

Suicide prevention hotlines struggle with how to handle high frequency callers

xijian/Getty Images

(NEW YORK) — Things at Family Services of Northeast Wisconsin have not slowed down since July 2022.

The center, which runs the 988 crisis hotline for the state, worked hard to expand its mental health services following the hotline’s national relaunch. Like many centers across the country, it has experienced surging demand that has outpaced anything experienced prior, Shelly Missall, the organization’s 988 program manager, told ABC News.

That level of surging demand has led Missall to make tough decisions. She says among them: limiting services provided to frequent users of the line.

“Restricting callers is not ideal for anyone,” Missall said. “But given the extent of the demand, and the state of their staffing, few choices remain.”

“We’re looking at our needs as a call center, to be able to meet the needs of the entire state and to be able to get to the…other folks who need help,” she added.

Since its launch in July 2022, demand for 988 has swelled. As of September 2023, five million individuals had received support by calling, texting or messaging the line. During that time, the federal government has invested nearly $1 billion into the hotline, including specific subnetworks for veterans, LGBTQ+, Spanish speakers and users of American Sign Language designed to meet each group’s distinct needs.

In the face of widespread staffing shortages amid the ballooning demand, 988 centers all over the country are being forced to make these same tough decisions for frequent callers, sources informed ABC News.

According to Vibrant Emotional Health, the national organization administering the new 988 hotline, crisis centers across the country are using callers’ names, numbers or even “the sound of their voice” to potentially limit services.

“Based on our policy requirements, centers are able to determine for themselves how they want to address familiar voices,” Divendra Jaffar, a spokesperson for Vibrant, told ABC News.

In an ideal world, the goal of a crisis hotline is to stabilize symptoms — not provide ongoing care — according to Tia Dole, 988 lead at Vibrant. But experts say that restricting callers goes against best practice for mental health care in a world where non-crisis care — like regular therapy — is hard to come by. With waitlists stretching into the hundreds — and wait times of weeks or months — 988 is the backstop.

Yet, centers are struggling to be that backstop for recurrent users while also staying available for everyone.

In response to this reporting, the Substance Abuse and Mental Health Services Administration (SAMHSA) said it is now working with Vibrant, and in turn local centers, to evaluate the need for restrictions on frequent callers and develop alternatives to those measures.

“Even with familiar callers, each contact is unique and crisis counselors use their experience to listen, support and connect people to various types of community-based care, if needed, while [also] making sure they are able to respond to incoming calls,” Monica Johnson, SAMHSA’s 988 director, told ABC News.

Difficult trade-offs

According to data from Vibrant, at least 1,000 callers across the country have been flagged as familiar voices. Centers in 39 states have consulted with Vibrant about placing restrictions on frequent callers, Jaffar told ABC News. The organization declined to share additional statistics or resources for determining how frequent callers are managed.

While a frequently asked questions page on SAMHSA’s website states that the line is “confidential,” that does not preclude cataloging callers’ phone numbers, names or the sound of their voice in order to identify frequent callers, Jaffar said.

Vibrant also does not have a universal definition for “familiar voices,” he added, “so some centers may identify an individual as being familiar to them with relatively few contacts, while others…may have a higher threshold.”

Family Services of Northeast Wisconsin has restricted frequent callers in various ways, Missall said. In some cases, they’re limiting calls to 20 minutes each, in others, they’re limiting individuals to three calls over a certain period of time and for some, they’re referring callers out to other resources such as a National Alliance for Mental Illness “warmline,” before terminating the call. Such non-crisis helplines are typically less equipped to respond to emergency situations, according to the American Psychiatric Association.

“Some of those boundaries might be necessary to help them build some of their own personal skills as far as being able to self-manage,” she said, “it’s never healthy for somebody … to become too overly dependent on any singular resource.”

Leading mental health professionals disagree that such an approach is likely to help patients.

“I am aware of no evidence that restricting crisis mental health services leads to positive outcomes,” Mark Olfson, a psychiatrist at Columbia University and former chairman of the scientific advisory committee for the American Psychiatric Association, told ABC News.

If resources are limited, “some mechanism may unfortunately be needed to ration care,” he acknowledged. But an inherent challenge persists in determining who needs care first, and whether calling frequently means each call is less serious, Chinmoy Gulrajani, a psychiatrist at University of Minnesota and medical director with the state’s Department of Human Services, told ABC News.

Tia Dole, at Vibrant, said that the organization encourages call centers to ensure a safety plan is in place and to coordinate other follow-up care when possible.

“[But] boundaries need to be set for a certain group of people,” Dole added, “and that’s the reality of running a crisis center.”

Nowhere else to go

Experts say there are ways to help frequent callers other than restrictions alone, which SAMHSA says it’s helping to roll out.

One approach involves developing specific protocols for brief, recurring check-ups with frequent callers, Madelyn Gould, a professor of psychiatry at Columbia University whose research informed the 2020 law inaugurating 988, told ABC News. Another strategy includes using peer supporters — a historically underutilized group of behavioral health workers who have been largely excluded from the 988 rollout — to staff hotlines devoted specifically to familiar callers.

These pathways, using 988 centers to direct those in need to additional follow-up care, would be consistent with SAMHSA’s 2020 guidelines on crisis care. But until that process is readily available, advocates worry about the effect restrictions may have on those in need.

Ellen Dayan, for one, is concerned.

Dayan herself has faced an enduring battle with mental illness time and time again, after a diagnosis of bipolar disorder in her twenties, she’s found herself relying on strangers on the other end of a telephone for support in moments of crisis, including suicidality.

Later, she took on the role herself, answering calls for a Toledo crisis prevention center, Help Network of Northeast Ohio. Dayan’s own experience with calling the helpline left her appalled when she was increasingly pressured by management to restrict services offered to repeat callers. They were only to be allowed a certain number of calls per week, or for a certain duration per call.

“The attitude was … that they’re clogging up the lines,” Dayan said, “but that’s a problem, you have to sustain those relationships because otherwise it’s just a slamming door.”

Help Network of Northeast Ohio did not respond to requests for comment.

Dayan said she tried to do what she could amid the restrictions, she had a list of roughly three dozen local mental health organizations that she’d distribute to callers to get plugged in. But those would often have months-long waitlists if they’d take her callers at all.

Which meant for many of those callers, 988 was the only option left.

In those cases, Dayan said, “a conversation — that’s all we have.”

If you or a loved one is struggling with a mental health crisis or considering suicide, call or text 988.

Copyright © 2023, ABC Audio. All rights reserved.

Physical and mental health toll on people trapped in war zones as Israel conflict continues

Ahmad Hasaballah/Getty Images

(NEW YORK) — As the conflict in Israel moves into its fourth day, thousands of people are caught in the war zone.

Hundreds of Israelis and Palestinians are dead, according to authorities, and more than 5,000 in Israel and Palestine have been injured since Saturday, when the militant group Hamas launched an unprecedented attack from air, land and sea.

Some residents in villages and towns along the Gaza border have been forced to hide in bomb shelters, while others have been evacuated to other parts of Israel and even to neighboring countries.

For those caught in such conflict areas, global health experts and psychologists said there is not only a significant physical toll, but a mental health toll as well.

“When we think about trauma in a war, in a conflict zone, I think it’s important to remember that what war brings is a convergence or a realization of all of our worst nightmares about fears of loss, of our own lives, about the lives of people we love, damage to our bodies, loss of control and also the loss of a familiar anchor in the routine of daily life,” Dr. Steven Marans, a child and adult psychoanalyst and professor at the Yale University Child Study Center, told ABC News. “And so, the symptoms that we see here are really a reflection of some of the tremendous impact that these sudden unanticipated threats and realization of these nightmare scenarios are created in in wartime.”

Impacts to human health

There are physical risks beyond the obvious for people living in war zones, such as breathing in smoke and ash from fires and blasts, which can affect the nose and lungs.

Dr. Ubydul Haque, an assistant professor of global health at Rutgers Global Health Institute, has studied how living in a conflict environment, such as during a war, can affect human health. In his research on the war between Ukraine and Russia, for example, which has been ongoing since February 2022, he found impacts on physical health that, again, may not be obvious at first thought.

“They have no access to medication, food, water, electricity, heating,” he told ABC News. “You know that during the war, their energy infrastructure was destroyed, and our study showed people had cold injuries that might make a lot of them permanently disabled.”

Further, people who suffer illness, malnutrition, injury, or sexual violence in a conflict environment may have trouble getting medical attention if hospitals are taken out of service, he said.

Mental health impact

Research also has shown that people living in war zones are at increased risk of a myriad of mental health issues, including depression, anxiety, post-traumatic stress disorder and more.

Marans said the general public often underestimates the mental health challenges of being caught in a war zone, due to fears such as the possibility of being injured or disabled.

“This is one of the costs of armed conflict,” he said. “Not just the destruction of buildings, not just the loss of lives, which are terrible enough, but also the impact on entire communities of young people and older people, the risks for their subsequent functioning, being able to live happily with greater freedom is significantly jeopardized.”

Dr. Angelica Diaz-Martinez, a teaching professor at Rutgers University’s Graduate School of Applied and Professional Psychology, told ABC News that people respond to trauma in different ways, with some acting more stoic and others unable to regulate their emotions.

She said that for people living in a state of limbo who are “having anxiety about what could happen, what may happen, trying to predict what’s going to happen — those are all things that are going to impact people for a long time, past the trauma.”

What’s more, if adults find it difficult to understand what’s happening and make sense of the conflict, children and teenagers may find it especially difficult.

“There might be some regression with children in terms of, if they were potty trained, they may have accidents,” Diaz-Martinez said. “There might be concerns about people leaving, so they might be a little more clinging, there might be anger or emotional dysregulation.”

Experts add that being in caught in a war zone may be especially difficult for those with pre-existing mental health disorders, making it difficult to access their medication or speak to their doctor,

Even so, Diaz-Martinez and Marans said there is hope that those affected can recover from trauma. Methods include establishing a routine for a sense of normalcy and talking to someone, if possible. Parents should have conversations with their children and listen to any concerns they may have.

Copyright © 2023, ABC Audio. All rights reserved.

Former NICU neighbors overcome rare heart disease to become college roommates

Thir Sakdi Phu Cxm / EyeEm/Getty Images

(NEW YORK) — Two neonatal intensive care unit patients who were once given a 40% chance of survival are now thriving years later.

Tate Lewis and Seth Rippentrop were born weeks apart in 2002. They were diagnosed in utero with hypoplastic heart syndrome, a congenital condition where the left side of the heart doesn’t form properly, and treated at Children’s Health.

Dr. Steve Leonard, a pediatric cardiothoracic surgeon at Children’s Health, who treated Tate Lewis, said the diagnosis can be deadly if not treated immediately.

“It’s a defect that is uniformly fatal if it’s not taken care of within the first few days of life,” Leonard told Good Morning America.

Cheri Lewis, Tate’s mother, recalled the moment she first heard about her son’s diagnosis.

“We were terrified when we found out about Tate’s diagnosis,” she told GMA.

Seth Rippentrop’s mother, Kimberly Rippentrop, said she also remembers that moment over two decades ago.

“I would pray, just asking God to let him come home and sleep one night,” she said.

The boys would need multiple surgeries and extensive treatment for their condition, which requires the reconstruction of the right side of the heart so it can do the job of a typical heart.

Their mothers met in the hospital NICU with their sons in side-by-side rooms.

Seth Rippentrop had to have three major surgeries and Tate Lewis, who also had a stroke that paralyzed one of his vocal chords, needed to have five surgeries.

Despite the odds, both boys survived and built a close bond together.

“I was just always very aware of the fact that I had half of a heart as a kid and I just always knew that there was something different,” Seth Rippentrop said.

“What we’ve been through in the past, I feel like, gives us hope,” he continued.

Today, the two close friends are both juniors in college and roommates at the University of Texas at Dallas, where Seth Rippentrop is a dean’s list student and Tate Lewis is a member of the men’s golf team.

Although they may have lifelong complications, both Seth Rippentrop and Tate Lewis say they feel positive about their future and know to never take life for granted.

“This was something we were born with and so we have to treat it with care but also we have to live life as well and set goals,” Tate Lewis said.

Said Seth Rippentrop, “We’ve already defied so many odds and we’ve already gone against so many expectations of what our life was going to be like so it makes me really hopeful for the future.”

Leonard added separately, “That’s the most rewarding aspect of what we do is to see these patients reach adulthood and to be able to fulfill their dreams.”

 

Copyright © 2023, ABC Audio. All rights reserved.

Excessive drinking during the pandemic increased rates of liver disease, transplants

Makoto Honda / 500px/Getty Images

(NEW YORK) — Transplant centers across the United States are reporting more patients in need of a new liver than ever before, sometimes seeing double the number of patients needing transplants compared to pre-pandemic levels.

In fact, alcohol-related liver disease has surpassed other conditions such as hepatitis C and fatty liver disease as the number one reason for liver transplants.

The demographics have also changed. Historically, patients needing liver transplants were older men in their 60s. Now, patients needing transplants are often in their 20s and 30s and there has been an increase in the number of women needing transplants.

Doctors told ABC News this is yet another unintended consequence of the COVID pandemic and that they hope to reduce the stigma so patients can feel supported in getting the help they need.

‘A nationwide phenomenon’

“It’s a nationwide phenomenon where, since the pandemic, there has been a notable increase in alcohol use, including harmful alcohol use where there is associated liver disease, and it has led to increased hospitalization of patients with liver injury due to alcohol,” Dr. Maarouf Hoteit, medical director of liver transplants at the Hospital of the University of Pennsylvania, said.

“And a subgroup of these patients, indeed, has advanced liver injury where we’re not able to improve the liver function with medical therapy alone,” he continued. “So that has resulted in, indeed, increased referral for liver transplantation for patients with alcohol [associated] liver disease, and especially since the pandemic.”

At UCHealth University of Colorado Hospital, about 40% of patients with liver disease due to alcohol who were screened every week needed a transplant before the pandemic. Currently, between 80% and 90% of patients with alcohol-assisted liver disease screened every week need a transplant.

Dr. Elizabeth Pomfret, chief of surgery at the hospital, said this is the highest number of patients with alcohol-associated liver disease who need transplants she’s seen during the course of her career.

She added that, traditionally, patients with liver disease from alcohol must have a period of abstinence and undergo professional counseling before being considered a suitable candidate for the liver transplant list. However, patients are often seeking help when they’re already quite sick.

“What we’ve seen during COVID, and subsequently, is that often these patients are presenting so sick that there’s no time for them to go through a counseling period, abstinence,” she said. “They’re presenting really with life-threatening illness that they will not survive without the transplant and so we’ve had to completely change the way we approach things.”

This means quickly putting a patient on the transplant list and working in tandem with specialists in addiction medication, inpatient rehab, outpatient rehab, psychiatry, and social work to address their severe alcohol use.

“Centers, including ourselves, have been a lot more accepting of willing to transplant patients with a sort of more recent history of drinking than we used to be,” Dr. Robert Cannon, surgical director for liver transplant at the University of Alabama at Birmingham, told ABC News. “Ten years ago, no one would transplant a patient if they’ve had a drink in the last six months. Now, more recently, over 85% of centers will transplant patients with recent drinking.”

Why drinking is on the rise

Doctors said there are many reasons why the pandemic may have led to an increase in alcohol use among Americans.

Hoteit said the stress that many people were experiencing related to COVID — including fear of contracting the virus and financial stress — as well as being isolated likely led to an increase in drinking.

Pomfret said another reason was that the culture of drinking changed during the pandemic, making it normal to drink outside of the evenings or weekends.

“There was also a culture of coping with things through having Zoom cocktail hours and Zoom cooking lessons…and so I think people in general often found that they were drinking a lot more alcohol than they typically did,” she said. “They might be drinking during the week, when that wasn’t something they normally did.”

Stigma around alcohol-associated liver disease

A woman in her 30s who underwent a transplant at UCHealth, and asked to remain anonymous, told ABC News she had already been drinking months prior to the pandemic but it felt more acceptable when lockdowns occurred.

“Drinking was more acceptable, and it was more a socially acceptable thing to do at the point,” she said. “Drinking was…it would be a distraction. It would be something fun to do…And I was sad, and I would only drink when I was sad. I was self-medicating.”

She said she stopped drinking at the beginning of 2021 and began seeking help from a therapist.

However, she started getting sick after she quit drinking and remained that way for months until she was directed to UCHealth in November 2021 and was diagnosed with liver cancer about a month later. She received her liver transplant in December 2022.

“It was intimidating. It was having to admit to mistakes, it was having to own things that you were embarrassed and ashamed of,” she said. “But I never felt judged when I was there, which was important, and it was that non-judgmental attitude…that helped me stay on the right path that helped me realize that other people believed in me and I cannot tell you how much that has helped in my recovery.”

Doctors say there is a stigma when it comes to patients with liver disease due to drinking and it might be preventing some people from seeking help over fears of being shamed.

“I think what we’ve learned and have realized is alcohol use disorder is a disease, just like cancer or any other and it’s one that’s treatable and trying to shift away from it being sort of focused on morality,” Cannon said. “And trying to reduce that stigma has been a big help for getting patients into treatment, getting them to help.”

Hoteit added that another challenge is the scarcity of mental health resources and substance abuse assistance resources to get patients the help they need.

“Everybody deserves a second chance,” he said. “And there’s a potential to help a lot more patients if we focus away from the stigma and focus on truly addressing this issue as a health care problem.”

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Innovations in Alzheimer’s treatment risk leaving Hispanic community behind, experts say

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(NEW YORK) — Evelin Miranda first noticed something was off with her husband, Eddie, about 10 years ago, when he started picking her up from work late. Then, her son Miguel told her Eddie hadn’t been paying bills on time.

“Things just weren’t getting better,” she told ABC News. “I was saying to myself, well, there’s something wrong.”

Eddie was eventually diagnosed with Alzheimer’s disease in 2018. He lives at home, and Evelin is his full-time caretaker. She has a nursing background, and was familiar with Alzheimer’s disease. But this was different.

“You never expect it in your own home, with your own loved one, your partner, that you share your whole self to,” she said.

The Mirandas’ story is featured on “Our America: Unforgettable,” an hour-long special produced by ABC Owned Television Stations in partnership with ABC News that takes a look at the alarming data of Alzheimer’s disease through a Hispanic and Latino lens.

Families like the Miranda’s are more likely than most to be struggling with the devastation of Alzheimer’s disease. Older Hispanic people have a higher risk of developing Alzheimer’s disease and other dementias than older white people — a 1.5 times higher risk, according to the Alzheimer’s Association. They’re also expected to have the steepest increases in rates of disease over the next few decades.

But they’re also less likely to benefit from research around the disease. Hispanic and Latino people tend to be diagnosed later in the course of the illness and are also less likely to participate in clinical trials investigating the disease.

Those are two key challenges in the efforts to reduce the burdens of Alzheimer’s disease, experts say — and make it less likely the group will be able to benefit from treatment innovations.

“We need action now,” Christian Salazar, a research scientist at the UC Irvine Institute for Memory Impairments and Neurological Disorders, told ABC News. “We need to address these disparities now.”

More disease, less diagnosis
There’s no clear answer as to why Hispanics are more at risk of Alzheimer’s disease, Dr. Zaldy Tan from Cedars Sinai told ABC News. It’s likely a combination of factors, including socioeconomic factors like income level, and rates of underlying illnesses like high blood pressure.

“I tell my patients that controlling diabetes and high blood pressure is important,” Tan said.

Even though older Hispanics are 1.5 times more likely to get Alzheimer’s disease or other dementias than older white people, the disease is underdiagnosed in the community — they’re only 18% more likely to be diagnosed with the disease, according to the Alzheimer’s Association. And when they are diagnosed, they’re often diagnosed later in the course of the disease, according to Maria Aranda, executive director of the USC Edward R. Roybal Institute on Aging.

“They do so when it’s later in the trajectory of the disorder,” Aranda told ABC News. “And as a result, they could be exhibiting higher levels of behavioral and psychological symptoms.”

The disease can be hard to detect, Tan said.

“It can take the form of forgetting to pick up something from the grocery, it could take the form of forgetting to pick up your kids after school,” he said. “It’s very subtle in the beginning.”

But Latinos also tend to see some memory loss as a normal sign of aging, which it is not, Tan said. So they put off going to see a doctor.

“There is that reluctance to come earlier for an evaluation,” he said.

Diagnosis can also be difficult for people who speak limited English or speak English as a second language, because it’s harder to communicate with healthcare providers, said Carmen Carrión, a neuropsychologist at the Yale School of Medicine.

“There’s also these cultural differences,” she told ABC News. “That creates a disconnect and can sometimes make it very difficult to communicate the difficulties that you’re having.”

Carrión is bilingual and conducts patient evaluations in Spanish, but few physicians in the United States speak Spanish.

“It’s important to have physicians that speak Spanish that can explain to the Latino families, because a lot of them, they don’t understand where Alzheimer’s is coming from,” Evelin Miranda said.

Getting diagnosed — and getting diagnosed early — is important to help people and their families prepare for the progression of disease, maximize quality of life, and make plans for caregiving, experts say. It also makes it more likely someone would be able to get access to new drugs that may be able to slow the progression of disease. The two drugs, Aducanumab and Lecanemab, are only approved for the early stages of the disease.

The importance of research
There’s a complicated tangle of issues around Alzheimer’s disease in the Hispanic and Latino communities. Researchers and doctors are making strides in understanding how to address them — but in order to push forward, they need to engage with people in that community.

“The only way that we’re really going to understand how or why it manifests differently among diverse communities is by having these diverse communities, Latinos, Hispanics, participating in research and clinical trials,” Carrión said.

But Hispanics are less likely to participate in clinical trials, research shows.

“Clinical trials come in two different types. You have pharmacological trials — those that are geared towards drugs — and those that are not geared towards drugs, the lifestyle interventions,” Salazar said. “We need Hispanic participation in both of these types of clinical trials, because without them, we won’t know how to intervene.”

It’s particularly important with new drugs on the horizon. Aducanumab and Lecanemab are the first drugs that may slow the disease down, not just treat symptoms, and there are other investigational drugs in the development pipeline.

“We are at the cusp of a revolution in understanding better treatments for Alzheimer’s disease,” Salazar said.

But in order for all groups to get the benefits of those drugs, researchers have to pursue strategies to encourage all groups to sign up.

“We have to do a better job getting the message out there,” Carrion said.

Copyright © 2023, ABC Audio. All rights reserved.

First on ABC: 4M Americans have gotten latest COVID shot — on par with last fall’s vaccine rollout

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(NEW YORK) — More than 4 million Americans have been vaccinated with the newest COVID shot as of Thursday, according to the latest government data, putting the uptake about equal to that of the COVID vaccine rolled out in October of last year.

While vaccination rates remaining on par with last year’s rollout is positive news for public health experts, the shot has reached fewer than 2% of Americans.

There are about 8 million more shots on hand for distribution, according to the Department of Health and Human Services, and in total 12 million shots have been shipped to pharmacies, doctors offices and clinics over the last few weeks.

Public health officials rubber stamped the latest COVID shot in September, matching the shot to the currently-circulating strain of the virus and recommending it for everyone 6 months and older.

It’s the first time that the COVID vaccine distribution has shifted over to the commercial market as opposed to the government, which purchased and distributed COVID vaccines while the country was in an emergency phase of the pandemic.

“COVID-19 vaccine distribution, which has shifted to the private market, is a lot different than it was last year when the government was distributing them,” a Health and Human Services Department spokesperson said.

The transition from government-run logistics to a medley of private insurance companies working with pharmacy chains, doctors offices and public health centers has resulted in a bumpy rollout, at times riddled with confusion about the cost of the vaccines, which are intended to be free, and challenges in getting appointments, particularly for children.

Insurance companies are supposed to cover the cost of COVID vaccines, per a law enacted by Congress, and anyone without insurance should have access to free vaccines through a Centers for Disease Control and Prevention-run program.

Pediatric vaccines have also been slower to become available than adult vaccines. According to CDC Director Mandy Cohen, manufacturers distributed adult doses of the shot first, but pediatric doses are following suit.

“Manufacturers and distributors were getting out the adult vaccines first. So that was what was shipping in the first number of days,” Cohen said last week. “The supply is filling out, and make sure that you’re calling ahead to your pediatrician or your pharmacy to see if the vaccine is available, and if not, check back again.”

Insurance companies, pharmacies and the government have said they’ve addressed any initial issues with the rollout and continue to monitor for ways to improve access.

“Certainly we’re aware of what consumers have experienced, these unexpected issues of point of service,” White House Press Secretary Karine Jean-Pierre said Monday. “And so, this is certainly a top priority for this administration.”

But public health officials warn that access issues during the initial rollout could deter people from getting their shots. According to Walgreens, the busiest weeks for COVID-19 immunizations historically have been the first four weeks after a vaccine becomes available.

And there has historically been a waning interest in COVID shots — just 17% of Americans, or 56.5 million people, received the booster shot that was rolled out last fall, according to data released by the CDC in May. That’s compared to nearly 70% of Americans, or 231.6 million people, who got vaccinated with the first COVID series.

There is also less data surrounding vaccinations — as well as COVID cases — because states are no longer required to report data with the same timeliness or consistency as they were during the public health emergency, which ended in May.

The data that is available, however, shows that hospitalizations rose over the summer and hit a peak in mid-September. Hospital admissions have decreased by about 3% since last week.

The government also relaunched its free COVID test resource, COVIDTests.Gov, about two weeks ago, predicting a fall and winter rise in cases once again.

So far, 45 million tests have been ordered and over 10 million tests delivered, according to the Department of Health and Human Services.

Officials expect they’ll continue to have ample inventory to meet demand, a spokesperson for the department said.

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Child drug poisonings and firearm deaths have skyrocketed in America: Study

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(NEW YORK) — Firearm deaths and drug poisoning deaths in children have spiked in the last decade, according to a new study in the United States. The study found an increase in firearm deaths by 87% and drug poisoning deaths by 133%.

Researchers looked at data from the Centers of Disease Control and Prevention’s injury reporting system. They analyzed injuries leading to death from 2011-2021 and nonfatal injuries from 2011-2020.

Overall, they found that fatal injury rates increased from about 14 deaths per 100,000 children in 2011 to over 17 deaths per 100,000 children in 2021. Firearm injuries made up the biggest portion of those fatal injuries.

Both the increase in firearm and drug overdoses may be because children can get a hold of these dangerous items easily, says Dr. Rebecca Mannix, an author on the study and a pediatric emergency medicine physician at Boston Children’s Hospital.

“The access issues of firearms and prescription and illicit drugs have also been a huge problem in the pediatric population,” she says. “There’s a reservoir of both prescribed and illicit drugs that kids have access to that can become quite deadly.”

The study found that pediatric injury fatalities sharply increased in the pandemic years of 2020 to 2021.

“The increase in pediatric injury-related deaths preceded the COVID-19 pandemic, though the pandemic exacerbated numerous factors underlying this disturbing trend, including access to lethal means, such as firearms and opioids, the mental health crisis and structural racism,” said Mannix in an email to ABC News. “In this way, the increase in deaths in 2020 to 2021 is an amplified trend that has been creeping up on us for the last decade.”

It remains unclear whether these trends will continue. The study also looked at the trends of injuries that did not lead to death in children.

Nonfatal injuries decreased by more than half between 2011 and 2020. Motor vehicle injuries saw a decrease by 47%.

While it is hard to determine why there was a decrease, Mannix and her team point to public health initiatives, such as booster seats for children, as a possible cause.

“This is largely due to public health interventions I think, in the last few decades, improving motor vehicle safety, improving helmet technology, [and] childproofing,” says Mannix.

Technological advancements and legislative requirements may also have contributed, experts say.

Public safety initiatives are key to keeping children safe, says Dr. Wee Chua, a pediatric emergency medicine physician at Massachusetts General Hospital and Harvard University. That includes “car seats, bike helmets, and the safe storage of firearms,” Chua says.

Despite overall decreases in nonfatal injuries, the rates of self-harm increased by 57%. Self-harm is the act of purposefully hurting oneself, and it’s associated with mental illnesses like depression and anxiety.

“I spend my clinical time in the ER,” says Mannix, “and I can tell you, there’s a behavioral health [and] mental health crisis in kids.”

Parents can prevent firearm injuries and drug poisonings by removing guns from homes, locking prescription drugs, monitoring for illicit and prescription drug use and seeing a doctor if your child is exhibiting self-harm behavior.

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