(GENEVA) — A new report published Monday by the World Health Organization found that a large number of adults — nearly 1 in 6 worldwide — are affected by infertility in their lifetime.
The WHO said that the new finding emphasizes the “urgent need to increase access to affordable, high-quality fertility care,” according to a press release.
The organization also reported that the new estimates found there is “limited variation” in the prevalence of infertility between regions and that rates are comparable among all countries and income levels.
Previous research from the Centers for Disease Control and Prevention suggests that 1 in 5 women in the United States, ages 15 to 49 years old with no prior births, are unable to get pregnant after one year of trying, which is considered infertility.
Both men and women can contribute to infertility.
Infertility expert Dr. Asima Ahmad is the chief medical officer and co-founder of Carrot Fertility. She said the new WHO report did not surprise her and that the number may be actually higher than reported.
“Previously, it was reported that 1 in 8 people experience infertility, but I have always thought that the true number was higher,” Ahmad told ABC News, adding that the WHO study only reported on female-male relationships with unprotected intercourse for one year without pregnancy, and that when same-sex couples, single-intending parents, or other individuals are factored in, the number of those seeking and needing fertility care is much higher.
She also stressed the importance of noting that while the “prevalence” of infertility is similar among countries, studying access to care in those countries is far more important.
“It’s also important to note that fertility care can be complex in many parts of the world,” she said. “Different countries and regions have varying laws and regulations around fertility care, which can make it even more complicated for individuals to access the treatments they need.”
(NEW YORK) — Drinking a glass of wine a day will not help you live longer, according to a new analysis of alcohol research that debunks a longstanding belief about the possible health benefits of drinking alcohol moderately.
The analysis, published recently in JAMA Network Open, looked at over 100 studies with nearly 5 million participants in all.
It found not only no significant health benefit to moderate alcohol consumption, but also that drinking a daily serving of alcohol of less than 1 ounce for women and around 1.5 ounces for men increased the risk of death.
“When you talk about risk versus benefit, it’s one thing to say there is no benefit,” said Dr. Jennifer Ashton, a board-certified OB-GYN and ABC News chief medical correspondent, who was not involved in the research. “It’s another thing, at certain levels, to find a risk, and that’s what this new research found.”
For women, a moderate alcohol intake per week is defined as seven servings of alcohol or less. For men, it is 14 servings of alcohol or less per week, according to the U.S. Centers for Disease Control and Prevention.
Heavy drinking is typically defined as consuming eight drinks or more per week, according to the CDC.
One serving of alcohol is defined as 5 ounces for wine and just 1 1/2 ounces for hard alcohol, far less than what is typically served in bars, restaurants and people’s homes.
The new analysis found that people who drank more than 2 ounces of alcohol a day had the highest risk of death, about 35% higher than people who drank more moderately.
The risk of death was also found to be greater for women, with a 61% increased risk for women who drink more than 2 ounces of alcohol per day.
Previous research has already shown that just as women metabolize alcohol differently than men, they also face more serious health consequences.
Women are more susceptible to alcohol-related heart disease than men; alcohol misuse produces brain damage more quickly in women than in men; women may be more susceptible than men to alcohol-related blackouts, or gaps in memory; and women who regularly misuse alcohol are more likely than men who drink the same amount to develop alcoholic hepatitis, a potentially deadly condition, according to the National Institute on Alcohol Abuse and Alcoholism.
Data shows that even casual drinkers face a greater risk of cancer, most commonly liver and throat cancers but also colon and head and neck cancers, in addition to breast cancer.
Drinking alcohol is listed by the Department of Health and Human Services as a known human carcinogen.
In 2020, the American Cancer Society updated its guidelines to say that cutting alcohol out of a person’s diet completely is best for cancer reduction and prevention.
Ashton said that it’s important for people to talk to their healthcare providers about their alcohol consumption to make the most informed decisions.
“Alcohol is a known carcinogen. We know it’s associated with an increased risk of cancer,” Ashton said. “But it’s also part of our social fiber and our culture, so it’s not an easy decision.”
Ashton also noted though that the data is “crystal clear” that abstaining completely from alcohol is best for a person’s overall health.
For questions and concerns about alcohol use, SAMHSA, the Substance Abuse and Mental Health Services Administration, has a 24/7 free and confidential helpline available at 1-800-662-HELP (4357), and online at samhsa.gov/find-help/national-helpline.
(NEW YORK) — Millions of people will begin to lose their health insurance on Saturday, as five states begin the unwinding of a pandemic-era protection that kept people from being removed from the Medicaid rosters.
During the public health emergency, states were required to keep people on Medicaid without the often yearly reapplication process normally in place. But now that the public health emergency is winding down, so are the Medicaid rolls.
“We’re now in a position within just a couple of days where states can begin to disenroll people — to redo their rosters for Medicaid — and this continuous coverage requirement is no longer going to be in place,” Dr. Avenel Joseph, vice president of policy for the Robert Wood Johnson Foundation, told ABC News.
The issue that Joseph and other advocates are concerned about is that not enough people know they’re about to get kicked off their coverage.
For Jeffrey Jackson, a 62-year-old Medicaid beneficiary in Arkansas who faces losing that coverage in a matter of days, that could be a “nightmare.”
Arkansas is one of the five states that will start removing people from coverage on April 1, along with Arizona, Idaho, South Dakota and New Hampshire.
Without Medicaid, Jackson’s financial decisions would have to come down to “whether I would eat or whether I will get my medication.”
Jackson said he’ll have to meet with his doctors to ask them what medications he can do without.
“We’ll look at what’s left and then I’ll say I’ll look at the price and what I can afford or can’t afford,” Jackson told ABC News.
Despite the dire stakes, losing Medicaid is a common problem that used to happen annually before the pandemic — the average person on Medicaid got about 10 months of coverage a year, because of something called “churn,” which often occurs when bureaucratic hurdles push people out of the system for reasons as simple as missing a letter in the mail or moving.
Despite the dire stakes, losing Medicaid is a common problem that used to happen annually before the pandemic — the average person on Medicaid got about 10 months of coverage a year, because of something called “churn,” which often occurs when bureaucratic hurdles push people out of the system for reasons as simple as missing a letter in the mail or moving.
“What we’ve heard from Medicaid administrators across the states is this is the largest shifting of insurance coverage for people since the Affordable Care Act was put in place over 10 years ago,” Joseph said. “This is a massive undertaking.”
“And with that kind of movement,” Joseph said, “vulnerable people will fall through the cracks.”
(NEW YORK) — As the worst of the COVID-19 pandemic appears to fade in the rearview mirror, public health departments are already preparing for the next threat, noting that they have built better operational infrastructure, but caution that budget cutbacks and a health care worker shortage may be putting the country at risk.
The World Health Organization has warned that the accelerating pace of climate change, deforestation and globalization means that it isn’t a matter of if, but when the next pandemic will strike. Even in the midst of the COVID-19 pandemic, state and local health departments were forced to grapple with yet another emergency last summer, with the emergence of the monkeypox (now known as mpox), outbreak.
At least 13 state health departments and 11 hospital associations told ABC News that chronic staffing shortages and new threats to funding may undermine their ability to swiftly respond to future pandemic threats.
“Without the personnel to do the hard work of analyzing data, interviewing cases, tracing contacts, testing specimens, and performing other essential public health activities, our nation is less prepared in some ways than it was before 2020,” Dr. Jay Varma, director of the Cornell Center for Pandemic Prevention and Response told ABC News.
The American Hospital Association has called federal lawmakers to reauthorize the Pandemic and All Hazards Preparedness Act to strengthen the Strategic National Stockpile, to fund the Hospital Preparedness Program, and require more collaboration between the federal government and stakeholders to build national data infrastructure.
Health care worker shortage
After a grueling three years caring for patients on the front lines of the COVID-19 pandemic, nurses continue to leave the health care sector en masse, according to state health departments and state hospital associations, sparking widespread shortages nationwide that states warn may lead to an inability to care for patients during a new outbreak.
Before the pandemic, Georgia was already dealing with a nursing staffing shortage. Now, with not enough nurses graduating in the state, the governor has created a statewide healthcare workforce commission to increase the hospital workforce, according to Anna Adams, the executive vice president, external affairs of the Georgia Hospital Association, a nonprofit trade group.
Part of the issue, health and hospital association officials from several states told ABC News, was the recurring cycle of worker shortages leading to increased labor costs – with turnover driving higher expenses to hire and recruit new staff.
“Now, nurses and others are leaving health care altogether, to companies that have signing bonuses and very high hourly rates. And so all of a sudden, hospitals are in a position where the only way we’re going to have an adequate nursing force is to work with the nurse traveler agencies,” said Brian Peters, CEO of the Michigan Health & Hospital Association.
In addition, some hospitals are experiencing negative profit margins, making less money in relation to their own expenses compared to before the pandemic. California health officials, for example, noted that over half of hospitals in the state already had unsustainable margins before the pandemic. This worsened during the COVID-19 pandemic as the state’s total hospital expenses rose 15% in just one year. According to state officials, California hospitals are losing money on operations.
Funding in flux
Early in the COVID crisis, as case counts exploded and deaths began to creep up, public health departments received hundreds of billions of dollars in funding from the federal government to support their work. But most of that money was earmarked to respond to the emergency — not to shore up public health permanently. Now, many are warning that the flood of money could transition to a trickle without renewal of some of the federal funds, which could lead them to cut contractual employees and reduce some of their initiatives.
“Funding comes in on specific diseases,” said Susan Kansagra, North Carolina’s state health officer. “When that disease goes away, funding goes away. We’re left rebuilding.”
Most state public health departments significantly expanded their workforce in the early days of the pandemic, and they have larger staffs now than in 2019. But many of those hires were temporary positions, including some epidemiologists and behavioral scientists. Washington, for example, stated that even now, 30% of its current workforce were in time-limited positions.
There is also high turnover in the public health sector. The Virginia Department of Health noted that about a third of its workforce had minimal work experience prior to 2019, whereas now 40% has less than two years of know-how on the job. Many experienced public health workers left their jobs in the past few years, often because of the political blowback and pressures from far-right groups opposed to things like masks and vaccines, state health officials told ABC News.
While most state health officials interviewed by ABC News shared they may need to tighten their ranks amid lower funding support, some felt confident in being able to revamp their workforce should another crisis arise.
“The takeaway for us is that we have worked through rapid hiring, onboarding, and training processes, so that we could do it again if needed,” the Utah Department of Health and Human Services said to ABC News in a statement.
There is also high turnover in the public health sector. The Virginia Department of Health noted that about a third of its workforce had minimal work experience prior to 2019, whereas now 40% has less than two years of know-how on the job. Many experienced public health workers left their jobs in the past few years, often because of the political blowback and pressures from far-right groups opposed to things like masks and vaccines, state health officials told ABC News.
While most state health officials interviewed by ABC News shared they may need to tighten their ranks amid lower funding support, some felt confident in being able to revamp their workforce should another crisis arise.
“The takeaway for us is that we have worked through rapid hiring, onboarding, and training processes, so that we could do it again if needed,” the Utah Department of Health and Human Services said to ABC News in a statement.
Identifying the next threat
With the rise of at-home tests and dwindling contact-tracing programs, public health departments have shifted their attention to different methods of identifying where COVID-19 is spreading most and detecting any new diseases that may pose a threat.
Wastewater has become a key tool for epidemiologists to quickly identify where pockets of the community may be experiencing a greater number of COVID-19 cases than usual. Most state health departments contacted by ABC News noted they had integrated a wastewater surveillance system and were tracking old and new threats.
Nevada officials shared that the state built “a viral respiratory surveillance program to expand upon influenza surveillance efforts to help understand what respiratory viruses are circulating, the magnitude of these viruses within communities, and the overall severity of the viral illnesses” with a team set to monitor data for early detection for potential surges.
Most states also developed dashboards to inform the public of case numbers and hospitalizations statistics as well as avenues to collect vaccine data or notify contacts of someone sick of an exposure. Those tools are in place and ready for future disease threats, so health department wouldn’t have to start from scratch.
“We’ve created forums for sharing information throughout the three years to ensure that we can continue to respond to COVID-19, and also that we will be ready in the future,” said Nicole Stallings, chief external affairs officer at the Maryland Hospital Association.
Experience counts, say health departments
State health department officials reached by ABC News overwhelmingly said their experience responding to COVID-19 means they are better prepared to react to a new health threat than in 2019.
“We’re better trained, better staff, better equipped and managed, more responsive, and experienced personnel, our information systems are much more robust. So, I think, at this point, and recognizing that all capabilities atrophied over time, but at this point, we’re much better prepared than we were in 2019,” said Robert Mauskapf, director of the office of emergency preparedness at the Virginia Department of Health.
Still, some public health experts remained skeptical, noting that budget and staffing problems — and even cultural shifts — will make it harder to respond to future threats.
Many states, for example, have passed or are considering laws that would prohibit mask mandates or vaccine requirements — both tools that helped protect people against the spread of COVID-19.
So even though health departments know the strategies that helped during the COVID-19 pandemic, they might not have the ability to implement them as successfully going forward.
“Federal, state, and local health departments have far fewer personnel today than they did before [the pandemic]. This is a consequence of public health staff being chronically over-worked and underpaid, public health officials being verbally attacked on social media, including by elected officials, and a broad national narrative that public health is somehow incompetent,” Varma said.
ABC’s John Brownstein, Ph.D., Sony Salzman, John Santucci, Nicole Wetsman, Emma Egan, Sara Avery, Alexandra Myers and Soorin Kim contributed to this report.
Drs. Christine Metz and Peter Gregersen are studying endometriosis through the ROSE Study at Feinstein Institutes for Medical Research. — Feinstein Institutes for Medical Research
(NEW YORK) — Victoria Balducci, a 39-year-old teacher in New York, was diagnosed last year with endometriosis, a condition that can cause debilitating pain and infertility for women.
Before getting that diagnosis, Balducci said she spent nearly two decades of her life living with menstrual cycles so painful she’d have to miss work or school.
“I’ve been to the [emergency room] because the pain was so bad sometimes I thought, ‘This can’t just be cramps. This has to be my appendix bursting,'” Balducci told “Good Morning America.” “I consistently was told that my [period] pain was normal. Nobody mentioned the word endometriosis once.”
It was only last year, as Balducci was starting the process of freezing her eggs, that she said a fertility doctor told her she should see a specialist for her pain.
Once she saw a specialist who told her she likely had endometriosis, Balducci had to undergo laparoscopic surgery, as it is currently the only way to diagnose the disease.
“It’s really invasive … and the recovery is very intense,” Balducci said of the surgery. “And the diagnosis and the surgery, for many, is a step because there is mystery around if the endometriosis is going to grow back, and if the pain is even going to go away.”
Researchers believe that endometriosis — a disease where the tissue forming the inner lining of the uterus is found outside of the uterus such as within the fallopian tubes, ovaries, bladder and intestines — affects more than 6 million women in the U.S. and as many as 200 million women worldwide.
Though it is one of the most common gynecological diseases, according to the National Institutes of Health, getting a diagnosis is often similar to Balducci’s experience: long and painful.
On average, women wait as long as seven to 10 years for a diagnosis, according to Christine Metz, Ph.D., head of the laboratory of medicinal biochemistry and a professor in the Institute of Molecular Medicine at the Feinstein Institutes for Medical Research in New York.
Metz said the delay can be due to everything from women being told their menstrual pain is normal, as in Balducci’s case, to the symptoms of endometriosis — painful menstrual cramps, chronic lower back and pelvis pain, pain during and after sex, bleeding or spotting between periods and digestive problems like diarrhea, constipation, bloating and nausea — being misdiagnosed and treated as gastrointestinal issues.
In many cases, the delay happens, she said, because patients are either not referred for diagnostic surgery, or are hesitant to undergo such an invasive surgery in order to be diagnosed.
“Endometriosis can only be definitively diagnosed through laparoscopic surgery, and that means a small camera is inserted into the abdominal cavity to look for endometriosis lesions,” Metz said. “The suspected lesions that they find during this scoping procedure are removed and then analyzed for the presence of endometrial-like cells.”
Metz said that in her own experience, she has seen patients who have gone as long as 20 years without a diagnosis of endometriosis.
For the past six years, Metz has worked to find a way to diagnose endometriosis that does not require surgery.
She and her research partner, Dr. Peter Gregersen, a rheumatologist and genetics researcher, believe they have found the answer in something that comes monthly for menstruating women: menstrual blood.
“Scientifically, it makes a lot of sense because the lesions that are found in the pelvic cavity contain the same cells that are found in menstrual blood,” Metz said. “And we believe that if you were healthy, most of that tissue and material would be removed.”
Metz and Gregersen are the co-directors of the Research OutSmarts Endometriosis (ROSE) study at the Feinstein Institutes for Medical Research.
So far, more than 2,400 women around the world have taken part in the study.
The menstrual blood samples are collected through menstrual sponges that Metz and Gregersen created as a way to collect the sample without any type of insertion, a request that came from participants, according to Metz. The researchers have also worked, she said, to make the diagnostic test “reasonably priced” so it is not cost-prohibitive once it hits the market.
By collecting just a small amount of menstrual blood on the sponge and then analyzing it, Metz said they have been able to document differences in the menstrual blood of people with endometriosis.
Late last year, Metz and Gregersen began a new clinical trial focused on people who are preparing to undergo laparoscopic surgery. The goal of the trial is to see if menstrual blood analysis can be used as a way to screen people for endometriosis, which would help people know more definitively that they could benefit from surgery.
“We hope to finish the trial by the end of this year or the beginning of next year and submit materials to the [U.S. Food and Drug Administration], so that we could get an FDA approval for either a diagnostic for endometriosis or a screening tool,” Metz said.
Endometriosis currently has no known cause, but Metz said by studying menstrual blood, she and Gregersen have been able to start unlocking some of the mysteries of how this common disease starts.
Endometriosis occurs in about 1 in 10 women of reproductive age but is more commonly diagnosed in women in their 30s and 40s, according to the American College of Obstetricians and Gynecologists.
There is no known cure for endometriosis, but treatment options include medications and/or surgery, including the medication Orilissa, which has been specifically studied and marketed for the treatment of endometriosis pain.
Metz said that due to a “frustrating” lack of research, doctors and researchers do not yet know what it would mean for women to be diagnosed with endometriosis soon after their first-ever menstrual cycle instead of years or decades later.
“We haven’t even been able to study whether early diagnosis will impact anything, because it’s never been studied in any organized way,” Metz explained. “We don’t know whether early diagnosis with the current therapies will even do anything.”
Through their years of research on menstrual blood, Metz said she and Gregersen have discovered it may help with more than endometriosis, and instead be more of a window into a woman’s overall uterine health.
“Nobody studied menstrual blood with respect to endometriosis, or any uterine condition, prior to our work,” Metz said. “It was never used to understand women’s health.”
In the future, Metz said she hopes collecting a menstrual blood sample will be a routine part of a gynecological exam.
“We believe it was a completely neglected biological sample, perhaps related to the ‘yuck factor’ associated with it,” Metz said of menstrual blood. “We have to dispel all of the negative discussion of being afraid to discuss periods and menstruation … We’re not afraid to talk about our leg pain or arm pain or our tooth pain, but somehow we’ve been quieted.”
(NEW YORK) — Months after the Food and Drug Administration first indicated that there was a shortage of ADHD drugs, suppliers are warning that those shortfalls could continue throughout the year — a source of frustration amid increased demand and diagnoses.
Amphetamine mixed salts, commonly referred to by the brand name Adderall, is a stimulant medication that can treat ADHD. It requires a prescription and as a controlled substance, supply is strictly monitored, and distribution is limited.
According to the FDA, Adderall is no longer in shortage, but generic versions are still impacted.
The FDA told ABC News that the shortage started with a delay from a manufacturer, which has since resolved, and is now demand-driven.
A CDC report released Thursday estimates that prescription fills for stimulant drugs — which are primarily used to treat ADHD — grew by more than 11% among adults ages 25-44 during the first year of the COVID-19 pandemic. Notable increases were also seen for adolescent females, as prescriptions increased more than 8% for those ages 10-14, and over 15% for those ages 15-19.
Suppliers are echoing demand issues, with Sandoz Pharmaceuticals, a division of Novartis, telling ABC News they expect the product to remain in tight supply for the entirety of 2023.
“At this time we are meeting current customer orders but have not been able to fill increased demand due to the initial quota in 2023 given to us by the DEA… We submitted our requests to the DEA for an increase in volume in 2023, but have not been granted our full request,” Leslie Pott, vice president of corporate affairs at Sandoz told ABC News.
Each year, the DEA sets a limit for the amount of active ingredient in controlled substances that can be produced by manufacturers.
Teva, the largest manufacturer of generic and brand name Adderall in the U.S, told ABC News that while the company is not currently experiencing manufacturing issues or shortages, “they are still seeing unprecedented demand which may cause intermittent delays for some pharmacies or patients.”
Alvogen and Teva have reported to the FDA that demand increases are behind the shortages, while Epic Pharma and US Pharma Windlas (a new manufacturer) have reported a shortage of the active ingredient.
Aurobindo Pharma and SpecGX are predicting supply issues through April 2023, according to the shortage database.
Dr. Anish Dube, chair of the American Psychiatric Association’s Council on Children, Adolescents and their Families told ABC News that there may be an increase in diagnoses due to increased awareness.
“I think there’s been a lot more awareness and knowledge and folks are getting assessed more frequently for ADHD and this could be a cause for increased diagnosis and treatment,” says Dube.
While people of all ages are affected by the shortage, school-age children and families are especially feeling the constraints.
Millions of US children rely on the medication. The latest estimates suggest that roughly 10% of US children ages 3-17 have been diagnosed with ADHD, according to the Center for Disease Control and Protection, and these numbers may have increased since 2019.
“Especially for children who are in school, or that are still doing any kind of virtual options, having to be in front of the screen for extended stretches of time, it can be particularly challenging for them to be sitting still or to be stationary for extended periods,” says Dube.
The American Academy of Pediatrics recommends medication, in combination with parent training in behavior management and behavioral classroom interventions for those in a classroom setting for children and adolescents ages 6-18 with an ADHD diagnosis.
Parents who are struggling to obtain their child’s medication and feel they’ve exhausted all options, should call their pharmacist or doctor to discuss a plan.
“It’s important that parents have a contingency plan with their prescribing physician… At least temporarily, you might be looking at other treatment options to help the young person to manage those symptoms,” says Dube.
The FDA says they recognize the potential impact that increased demand of certain products may have on health care providers and patients, and are working to alleviate constraints.
“The FDA is working closely with numerous manufacturers, agencies, and others in the supply chain to understand, mitigate and prevent or reduce the impact of intermittent or increased demand of certain products,” an agency spokesperson told ABC News.
(NEW YORK) — The U.S. Food and Drug Administration approved the overdose reversal drug Narcan for over-the-counter use on Wednesday — a milestone decision that advocates said will make it easier to save lives amid the ongoing opioid epidemic.
(NEW YORK) — When Candace Henley, 55, was diagnosed with colorectal cancer 20 years ago, all she wanted was to see her youngest child turn 18.
“I wouldn’t ask [God] anything, but in return I would do what I needed to do to save someone else from going through the trauma that I and my family went through,” Henley told ABC News’ Good Morning America.
Now a cancer survivor, Henley is making it her mission to educate others about the disease and save lives.
What is colorectal cancer?
Henley was 35 years old when she was diagnosed with the disease.
She told GMA that she recalled being in “so much pain.”
“I couldn’t stand up,” she said. “Finally, one of my cousins said we’re going to the emergency room.”
According to the Colorectal Cancer Alliance, colorectal cancer or CRC is a “disease of the colon or rectum.”
Signs include abnormal growths in the colon or rectum that can turn into cancer if not removed, according to the Centers for Disease Control and Prevention. However, someone could have polyps or colorectal cancer and not know it, according to the CDC.
The disease typically occurs in people ages 45 and older, but is on the rise among younger people, according to the CCA.
Earlier this month, the American Cancer Society reported that one in five cases of the disease in 2023 occurred in people under 55. Colon cancer is also the most common cancer and the second most common cancer death in the U.S., according to the ACS.
“Colorectal cancer is one of those things that people really don’t like to talk about,” Sophie Balzora, a gastroenterologist and clinical professor of medicine at New York University, told GMA. “And it does prevent people from going to the doctor to talk about their symptoms or even just talking about screening.”
Health experts like Balzora have stressed the importance of getting screened regularly for colorectal cancer as a way to reduce the risk of it. Screening for colorectal cancer should begin at age 45, according to the CDC, but if you have a family history of it, you should get screened earlier for the disease.
The Blue Hat Foundation
Henley is now using her story to raise awareness about the disease, especially among those in the Black community, where rates are the highest of any racial or ethnic group in the U.S., according to the ACS.
Henley founded The Blue Hat Foundation in 2015, with the goal of raising awareness about CRC. It began at her church and has since expanded into a thriving organization.
“We’re trying to make sure that we connect the patient to what they need,” Henley said.
“I don’t want anyone to go through what I did,” she added. “Communities of color will continue to be left behind in research if we don’t participate willingly this time. We have to do our part to help improve our community’s health outcomes and it’s not enough to complain and wait. We must be proactive, educate ourselves and make informed decisions about our health.”
For more information and resources on colorectal cancer, visit Colorectal Cancer Alliance online where you can take a screening quiz. Colorectal cancer patients and caregivers can also receive free support at CCA’s BlueHQ website.
(NEW YORK) — Angelina Cubero said she spent nearly a decade of her life going to doctors, trying to find out why she experienced migraines, brain fog numbness and pain in her legs, and other unexplained symptoms.
“I would go to the doctor, I would go to the ER, I would go to urgent cares, I would go to my primary doctor, I’d go to a specialist, another specialist, and I wasn’t really getting any answers,” Cubero, 27, told ABC News’ Good Morning America. “They would say, ‘You look fine. You don’t look sick. All your tests seemed normal to me.’ … The only reason they told me was anxiety.”
Cubero, who lives in Jersey City, New Jersey, said it was only three years ago, in 2020, that she underwent a second brain magnetic resonance imaging scan, or MRI, where doctors discovered multiple lesions, or plaques, in her brain.
The discovery led to a diagnosis of a disease Cubero said she had never heard of, multiple sclerosis.
“I’d never heard of MS,” Cubero said. “I had to do my own research to figure out what is MS, and that was scary.”
Multiple sclerosis is a neurological disease in which the immune cells in the body body injure myelin, the tissue that surrounds nerves, including those in the brain and spinal cord, according to the National Institutes of Health. It is a chronic disease, with no known cause and no known cure.
It is also a disease that can be unpredictable, causing differing symptoms with variable timing and frequency, from fatigue, numbness or tingling, weakness, dizziness and vertigo to, in the most severe cases, rendering a person unable to write, speak or walk, according to the NIH. Even individually, MS symptoms can vary, ranging from mild to extreme pain during a flare-up of the disease.
Cubero said that as a Hispanic woman who was 24 years old when she was diagnosed with MS, she struggled to find anyone who looked like her talking about the disease.
“There were so many questions I had, and it was really hard to find those answers,” Cubero said. “I didn’t really find much information on how it affects the Hispanic community … and I didn’t know how it affected young people.”
Cubero was a senior in college when she was diagnosed, and said she decided to write her senior thesis on either MS and young people or MS and Hispanics.
“I was like, ‘I’ll do one or the other,’ and I couldn’t find research for either,” she said. “So that was the tricky part, not only for my project, but also for personal knowledge on how this new disease that I have affects me.”
Why Hispanics have been overlooked in MS research
Though Cubero struggled to find representation after receiving her MS diagnosis, she is not alone.
Symptoms for people with MS usually first start between the ages of 20 to 40, and the disease is estimated to be three times more common in women than men, according to both the NIH and the National Multiple Sclerosis Society, a nonprofit organization focused on raising MS awareness and increasing research.
In addition, people of Hispanic or Latino descent are more likely to be diagnosed with MS at younger ages and have earlier onsets of symptoms, according to the National Multiple Sclerosis Society.
Julie Fiol, the organization’s associate vice president of health care access, told GMA that Cubero’s experience of struggling for years to get a diagnosis is not uncommon among MS patients, especially for people of color.
“It can be challenging for anyone to receive a diagnosis because there is no one, easy-to-access confirmatory test that says that you have MS,” Fiol said. “There are several tests, like an MRI, that can be done that can help rule in and confirm a diagnosis of MS, but before even getting that, it requires someone to be connected with a physician who takes them seriously, acknowledges that their symptoms are real and can put together that the person who is sitting in front of me could potentially have MS.”
She continued, “For far too long, MS was viewed as a disease that affected white people, so if you didn’t fit that mold of what that clinician was expecting to see for MS, they may not have even considered MS as a possibility.”
In Cubero’s case, she said it was only when she found an MS specialist who is also a psychiatrist that she began to receive the treatment she needed.
“He understood what was anxiety and what was MS, and he heard me out and he said, ‘No, you actually have relapsing-remitting MS. Those are MS symptoms,'” Cubero said. “That was when I finally felt validated and secure, like, OK, I can trust my doctor moving forward and we can come up with a plan that works best for me.”
With relapsing-remitting MS, the most common type of the disease, symptoms occur in attacks, called a relapse or exacerbation, followed by a period of remission that may last for weeks, months or years. People with secondary-progressive MS have usually had a history of MS attacks and their symptoms and ability to function worsen over time. In the two more severe and rare forms of MS — primary-progressive MS and progressive-relapsing MS — people’s symptoms progressively worsen from the beginning, with no remission, according to the NIH.
People of Hispanic and Latino descent often have more severe symptoms of MS, with a faster severity of disease, according to the National Multiple Sclerosis Society. In addition, optic neuritis, or swelling of the eye’s optic nerve, which can impact vision, is twice more common in Hispanic people with MS.
Exactly why Hispanic patients are hit younger and more severely by MS remains to be seen because research has been so limited, according to Dr. Lilyana Amezcua, who is considered one of the pioneers in researching the impact of MS on the Hispanic and Latino communities.
“Is that all an issue of access to care and what we call social determinants of health, or are there other environmental factors and genetic predispositions that do not allow for better recovery of the disease? Those are all questions that are unanswered at this time,” Amezcua said.
Amezcua, a neurologist and Multiple Sclerosis Fellowship Program Director at the University of Southern California’s Keck School of Medicine, said she began studying the connection a decade ago as a practicing neurologist in Los Angeles. At the time, she said less than 1% of MS scientific literature focused on Hispanics or African-Americans.
“One of the things that I was observing was that with Hispanic patients, there was a delay of diagnosis,” she said. “When I would compare them to what I would expect for white people, it was about one to three years delay of getting that diagnosis, so from there we started with our first initial studies to better understand this population.”
As she began her research — founding the Alliance for Research in Hispanic MS, a collaboration between multiple universities — Amezcua said she and her colleagues discovered that Hispanics had been vastly underrepresented in clinical trials. When it comes to clinical trials on medications to treat MS, for example, just 7% of participants are Hispanic, according to Amezcua.
“We know probably that the drugs do work, but we don’t know to the extent, particularly if the disease in [an Hispanic patient] is starting a bit more worse,” she said. “What is the possibility that we’re going to sort of calm [MS] down more effectively with one drug?”
Amezcua said the group is now leading a global study that is researching one specific drug targeted for Hispanic and African-American populations, which were both underrepresented in other clinical trials.
The group’s research over the past decade has also shown that many of the genetic risk factors present in white people diagnosed with MS are also present in the Hispanic population, according to Amezcua.
“We’re hoping to dig deeper to see if there’s additional risk factors that are both genetic and environmental that could help us understand … MS, and help not just Hispanics but everyone else,” she said, adding that while there are barriers, more and more Hispanic people want to participate in MS research.
“We find that there’s a high interest of wanting to participate because they’re interested in understanding what does MS look like in them, what are the best treatments out there and what services are out there?” Amezcua said.
Both Fiol and Amezcua noted that in addition to scientific research, a large part of the work being undertaken by researchers and patient organizations like the National Multiple Sclerosis Society is to educate both medical professionals and the general public about all the populations MS may impact.
In the Hispanic community, that means working to increase access to MS specialty centers and educating people about MS as a “silent disease.” The education includes sharing information about the signs and symptoms of MS both so that people can get medical care earlier, and so families and caregivers understand more about the disease.
“In MS you have those symptoms that are visible, like walking with a cane, but you also have the silent symptoms and the silent symptoms can culturally be an issue,” Amezcua said, noting that fatigue, for example, may be perceived as laziness to people unfamiliar with MS. “MS is not as common as, let’s say diabetes and hypertension is in this population, so many of [a patient’s] family members may not have heard about MS.”
Fiol said a large part of her work at the National Multiple Sclerosis Society is focused on recruiting MS specialists like Amezcua, who are Hispanic.
“We know that people feel more comfortable seeking care from doctors that they feel they can trust and can relate to, and sometimes that has to do with just finding someone that looks like them,” Fiol said. “And only 7% of the neurology workforce in the U.S. is Hispanic, so we have a lot of ground to cover and a lot of work to do.”
Becoming a voice for Hispanic people with MS
Nearly two years after she was diagnosed with MS, Cubero said she began sharing her journey publicly on social media in hopes of raising awareness of the disease and how it can impact Hispanic people as well as young women.
“Having a diagnosis leads to treatments, which leads to a better experience,” Cubero said of the importance of people knowing the signs and symptoms of MS. “I’m just grateful to have a diagnosis because it led me to an MS center, which has a lot of resources for me to improve.”
Cubero also began to use her voice literally to help raise awareness, singing about her journey in order to help educate people and make others with MS feel less alone.
“I wish I had that when I was searching for answers,” said Cubero, who performs under the stage name Lina Light. “It’s bittersweet for me, but I’m really happy to help others because I feel like I’m going through this for a bigger purpose. It wasn’t just my story, it was to help others to get through their diagnosis too and to support each other.”
Cubero said she has met other “MS warriors” through the National Multiple Sclerosis Society, which last year hosted its first-ever Hispanic LatinX Experience Summit that brought people together to connect virtually with each other.
The National Multiple Sclerosis Society is now also establishing an Hispanic-Latinx Collaborative, an initiative designed to increase outreach and engagement with those communities, according to Fiol.
Throughout her years-long health journey, Cubero said she has learned to advocate for herself. It’s one of the lessons she said she hopes other people take away from her story.
“I really want people to be their best advocate, to speak up,” she said. “I know that it can be intimidating. I know that it can be hard, but you have to speak up. You deserve the best care.”
(NEW YORK) — Patricia Royalty’s world turned upside down last June when her 34-year-old husband Dakota Royalty died from cirrhosis. The 36-year-old mother was left caring for the couple’s five children.
“He meant a lot to the kids. He was always a really good father,” Patricia said in an interview with ABC News. “When my 5-year-old went to school in January, they asked her what her new year’s resolution was. She asked for her dad back.”
Royalty’s children are among a growing group of children who have lost a parent or sibling. A new report from Judi’s House – an organization that advocates for grieving kids and families – found that one in 12 kids will lose a parent or sibling by age 18. Since the pandemic, the rate has continued to increase.
Micki Burns, a co-author of the report, said that on top of the grief, children who have lost a parent can feel isolated because it’s difficult for other kids to understand grief and loss.
“Recognizing that [losing a parent or sibling] is prevalent is important,” Burns said in an interview with ABC News. “It’s something that we need to start to talk about more openly and more easily so that the children don’t feel so isolated.”
Losing a parent during childhood is an important risk factor for adult mental health problems and the issue is often overlooked, according to M. Katherine Shear, a grief expert at Columbia University.
While grief affects everyone in different ways, Shear said children are oftentimes not the focus of support from community members. She said this most likely happens because people think children are more resilient than their grieving parent.
“[Kids are then] in a situation of great emotional need with a parent who is less able to provide it due to their own intense grief,” Shear said in an email to ABC News. “It’s very important that clinicians learn about childhood grief, how to recognize and treat it.”
The researchers behind the new report also found higher rates of childhood grief in some southern and Appalachian states. West Virginia had the highest rate, with approximately 13.3% of children experiencing grief, while Minnesota had the lowest rate. Arizona, Royalty’s home state, had a rate of 8.8%.
It’s unclear why certain states had lower rates, but Burns suggested the differences may depend on resource availability and state laws. She said states like West Virginia may have reduced access to health care and other resources.
Burns also emphasized that the causes of death have changed over the years. According to this year’s report, the leading causes of death for parents are accidents, heart disease and cancer. Birth conditions, accidents and birth defects top the list for siblings who die.
Suicide and homicide are also among the leading causes of death. Royalty’s sister, who had one child, died earlier this year from a fentanyl overdose.
Burns said she noticed a large uptick in suicide and drug overdose deaths during her career.
“That’s where we really see kids coming in questioning, ‘Was this because of something I did? Was this because I wasn’t a good enough son or good enough sibling?'” Burns said. “I think it’s alarming and it’s saddening.”
Shear pointed to research suggesting that negative outcomes in children, such as depression, continue to affect them for as long as seven years on average after a relative’s death.
While Royalty’s children are still learning to grieve their father’s death, they receive emotional and social support at school. They are also finding ways to honor her late husband.
“I feel bad for kids who experience this at a young age. It’s difficult for them to show emotions and open up,” Royalty said. “Always remain strong. Know that your parents will be watching you regardless. Do anything and everything to make them proud of you.”
Michal Ruprecht is a medical student at Wayne State University School of Medicine and a member of ABC News Medical Unit.
