(NEW YORK) — The country’s largest nurses’ union praised the federal government on Wednesday after officials said three states tasked with implementing their own safety measures for health care workers would lose that right unless they adhered to agreed-upon guidelines.
The U.S. Occupational Safety and Health Administration had announced Tuesday it was considering stripping Arizona, Utah and South Carolina of their abilities to oversee workplace safety enforcement because they’re not in compliance with an emergency standard order passed over the summer that guarantees certain protections.
OSHA had allowed 22 states to oversee work conditions for health care workers — measures including the wearing of personal protective equipment, or PPE, enforcing social distancing, providing paid sick leave — so long as local workplaces adopted requirements at least as strong as those agreed to at the federal level.
Deborah Burger, president of National Nurses United, which represents over 175,000 nurses, said in a statement on Wednesday that health care workers from coast to coast have been pushing for better protections as they put themselves at risk working on the front lines of the coronavirus pandemic.
“We urge federal OSHA to act expeditiously to put in place the necessary elements for federal OSHA to resume enforcement in Arizona, Utah, South Carolina and any other states which fail to enforce the [emergency standard] to ensure protections for health care workers,” Burger said in a statement. “We will never emerge from this pandemic if we don’t make sure nurses and health care workers are safe at work.”
The Republican governors of Arizona, Utah and South Carolina defended their states’ action and accused OSHA of overreach.
Arizona Gov. Doug Ducey contended that the Industrial Commission of Arizona’s OSHA, or ICA, the state’s workplace overseer, intends to comply with the emergency standards but is seeking public input on the mandate. Ducey accused the federal government of not justifying its threat to revoke oversight powers.
“The federal government’s threat to strip the ICA of its OSHA authority is nothing short of a political stunt and desperate power grab,” Ducey said in a statement.
Utah Gov. Spencer J. Cox said in a statement that he had concerns over the emergency standard, saying it “would place an unfair burden on the health care industry” and his state didn’t “have regulatory authority to require employers to pay their employees sick leave.”
“We reject the assertion that Utah’s State Plan is less effective than the federal plan,” Cox said.
South Carolina Gov. Henry McMaster said his office is preparing for “a vigorous and lengthy legal fight” and that OSHA’s announcement Tuesday was “clearly a preemptive strike by the federal government.”
Burger stressed that all three states needed to prioritize the safety of health care workers and come together to make sure they’re protected as hospitalizations keep increasing.
“Arizona, South Carolina, and Utah had the duty — legally and morally — to come into compliance and protect workers,” Burger said. “They did not, and we could not be more proud that OSHA is standing up to hold them accountable today.”
(WASHINGTON) — The FDA on Wednesday announced it has authorized boosters for millions more Americans, giving a green light for third shots to people who received the Moderna and Johnson & Johnson vaccines.
The FDA also says it will allow people to mix and match booster doses.
The agency detailed its decision in a news release that said a single booster dose of the Moderna vaccine may be administered at least six months after completion of the primary series to individuals 65 years of age and older, those 18 through 64 years of age at high risk of severe COVID-19 and those 18 through 64 years of age with frequent institutional or occupational exposure to the virus.
It went on to say the use of a single booster dose of the Johnson and Johnson vaccine may be administered at least two months after completion of the single-dose primary regimen to individuals 18 years of age and older.
Nothing has changed yet for individuals.
A Centers for Disease Control and Prevention advisory committee will meet Thursday and cast a non-binding vote on the matter and then CDC Director Dr. Rochelle Walensky will release final recommendations.
This is developing story. Please Check back for updates.
(NEW YORK) — One day after making a surprise revelation on live television that he has multiple sclerosis , CNN anchor John King said he hopes his openness inspires people to take precautions against COVID-19 seriously.
“I’m not supposed to be part of the story, I’m supposed to cover stories,” King said Wednesday on “Good Morning America, adding, “If my personal experience can help anybody or help people understand, again, that the person next to you, you may not know, on the subway, or on the bus, in a coffee shop might need your help and you can do a couple easy things to make them feel safer, if I can help with that, then so be it.”
The “Inside Politics” host opened up about his own MS battle Tuesday during a segment in which COVID-19 vaccine mandates were discussed, following the death of former secretary of state Colin Powell, who died Monday morning due to complications from COVID-19.
Powell, who was fully vaccinated, was being treated for multiple myeloma, which compromises the immune system. He had also been diagnosed with Parkinson’s disease, according to his spokesperson.
“I’m going to share a secret I have never spoken before. I am immunocompromised,” King said on his show. “I have multiple sclerosis. So I am grateful you are all vaccinated. I am grateful my employer says all of these amazing people who work on the floor, who came in here in the last 18 months when we are doing this, are vaccinated now that we have vaccines. I worry about bringing it home to my 10-year-old son who can’t get a vaccine. I don’t like the government telling me what to do. I don’t like my boss telling me what to do. In this case, it’s important.”
King, 58, who is CNN’s chief national correspondent, told “GMA” that he had not planned to reveal his MS diagnosis live on-air, but felt compelled in order to help combat what he called “reckless and dangerous” rhetoric around COVID-19 vaccines and other safety measures.
“We should be willing to do hard things to help other people,” he said. “Rolling up your sleeves and getting a safe vaccine is easy. Putting on a mask in a crowded place is easy. So why can’t we do the easy things?”
“These steps are easy and they could help a friend or a neighbor or a stranger get through the day,” King added.
Currently, just 66.8% of Americans ages 12 and up are fully vaccinated against COVID-19, according to data from the Centers for Disease Control and Prevention.
King said he has taken extra safety precautions himself during the pandemic, for his own health but also to protect his family, including his 10-year-old son, who is currently too young to receive a COVID-19 vaccine.
Studies have shown vaccinated individuals are significantly less likely to spread coronavirus to family members within a household, National Institutes of Health director Frances Collins wrote in a blog post Tuesday on the safety of the vaccines.
In addition to being fully vaccinated, the CNN anchor said he also received a vaccine booster shot.
“I don’t like being told what to do. I don’t want my employer telling me you have to get a vaccine. I don’t want the government telling me I have to do things, but this is bigger than that,” he said. “Moments in American history when we’re all challenged, when we’re all at risk, we’re supposed to come together and set the politics stuff aside and just love thy neighbor, protect thy neighbor.”
King said he has relapsing-remitting MS, which is the most common disease course, according to the National Multiple Sclerosis Society.
He said he takes medication to slow the progression of the disease and considers himself “lucky,” but still faces days where the MS is “very frustrating.”
“Today I’m having a problem with my hands. I have not been able to really have full sensation in my legs since late in the Clinton administration,” he said, noting that his MS diagnosis came several years later. “There are some days this knocks me on my you know what, there are other days it’s just a little nagging.”
“But it has made me stronger. I hope, I certainly hope it has made me a better person,” King continued. “And it’s made me aware, again, that a lot of these symptoms, a lot of the stress people are going through is hidden. You cannot see it, but we should just be aware that it’s out there.”
(NEW YORK) — For Mitchell Kronenberg, answers on the Johnson & Johnson vaccine can’t come soon enough.
A 42-year-old dad living outside Charlotte, North Carolina, Kronenberg enrolled in a clinical trial for the single-dose vaccine and got his shot last January. Since then, he’s been patiently waiting for U.S. federal regulators to tell him what to do next to stay safe: Should he get another Johnson & Johnson shot? Switch to Moderna or Pfizer? Is his single-shot vaccination enough to protect him from spreading the virus to his unvaccinated 4-year-old son?
“Why is it taking so long? You have people out on a ledge out here,” he said of the process.
The U.S. Food and Drug Administration is expected to decide as early as Wednesday whether the 15 million Americans who got the single-dose J&J shot by Janssen Pharmaceutical Companies should get a second dose. The decision comes after studies suggested effectiveness against moderate and severe symptoms climbed from 70% with one dose to 94% with two doses.
Also anticipated is a decision on possible third booster shots for Moderna recipients and whether Americans can mix vaccine brands when getting a booster.
With a decision expected soon, an advisory panel to the Centers for Disease Control and Prevention planned to meet Thursday to offer the public a final recommendation.
Typically a wonky endeavor ignored by most Americans, the FDA and CDC regulatory process is now being closely followed by millions of Americans. People describe joining private Facebook groups to swap the latest research and repeatedly getting their antibody levels checked, even if experts warn it’s an incomplete measure of a person’s immunity.
Some have even opted to mix booster shots on their own even without the federal government’s blessing.
“Every day, I was researching, Googling, reading everything I could get my hands on,” said Lynne Conway, a 59-year-old development officer for an animal shelter in Ithica, New York.
Conway said she experienced mild heart inflammation following her first dose of Moderna last March. After ruling out other causes, her doctor recommended she get the J&J so she can be fully protected against COVID-19. She got that shot in August, despite there being no official green light from regulators to mix shots in such a way.
“The relief of finally deciding to get the (J&J) vaccine, and have it over with, was monumental,” she said.
J&J recipients are among those who expressed being most on edge emotionally, with the 70% effectiveness after one shot — lower than the two doses of Pfizer or Moderna.
Jadzia Pierce, who lives outside of Washington, D.C., said she was relieved regulators were inching toward a decision. In her early 30s, Pierce isn’t at serious risk of major complications from COVID-19.
But she also would like to visit higher-risk relatives this holiday season and to know she’s not at risk of infecting them.
“Even if the answer is (that it puts) other people around at risk, then I guess I just won’t go home,” she said. “I just feel like safety is the most important thing at this point and that’s really all that matters to me.”
J&J declined to comment for this article, citing pending action by regulators. But last Friday, after a meeting of FDA advisors, a top company official told ABC News the J&J vaccine likely protects people by triggering the protection of a person’s T-cells, which is harder to measure than antibodies.
J&J’s “biggest, most impressive components are T-cells, which contribute to both efficacy and durability of our vaccine,” said Mathai Mammen, global head of R&D at the Janssen Pharmaceutical Companies of Johnson & Johnson.
For its part, the FDA says its staff is working around the clock to comb through technical data. The CDC too has to hear from its own advisory panel before making a decision.
Kronenberg, who has to travel for work as a director for a medical device company, said he still worries about spreading the virus to his son. He says he understands wanting to get it right but wishes the various agencies could get in a room together and hash it out immediately, rather convene separate meetings and reviews that can drag on for weeks.
Pierce, also in limbo having received the J&J, said she’s torn on whether to be frustrated with the regulatory bureaucracy.
“I’m trying to be patient. I do realize that this stuff takes time, and I don’t want to be following advice that is too rushed and not complete,” she said.
ABC News’ Sony Salzman contributed to this report.
(NEW YORK) — Getting a COVID-19 vaccine isn’t just about protecting yourself, it goes a long way toward protecting your family, according to a new blog post by the director of the National Institutes of Health.
Dr. Francis Collins also noted in his Tuesday post that the data shows adults getting vaccinated helps protect those who can’t get vaccines, especially children.
“This is a chance to love your family — and love your neighbor,” Collins wrote.
Collins reiterated that studies have shown vaccinated individuals are significantly less likely to spread coronavirus to family members within a household. He cited a Swedish study published in JAMA Internal Medicine Journal last week that looked at 1.8 million people from more than 800,000 families “who acquired immunity from either previous COVID-19 infection or full vaccination.”
“The data show,” Collins wrote, “that people without any immunity against COVID-19 were at considerably lower risk of infection and hospitalization when other members of their family had immunity, either from a natural infection or vaccination.”
Specifically, the study found that households with one immune family member had a 45% to 61% lower risk of a COVID-19 infection, and that when a household included two immune family members the risk dropped 75% to 86%. With three or more immune family members, the risk of infection dropped almost 97%.
“These results show quite clearly that vaccines offer protection for individuals who lack immunity, with important implications for finally ending this pandemic,” Collins wrote.
Dr. John Brownstein, an epidemiologist at Boston Children’s Hospital and an ABC News contributor, said Collins’ message is important because there needs to be more emphasis on how getting a vaccination is an altruistic act for the entire community.
“We get a lot of focus on individual risk and side effects, and it takes our eye off the ball for the real reason we can and want the population to get inoculated,” he said.
MORE: COVID-19 vaccine shots for kids under 12 may be available in November: 6 things to know
Brownstein said it’s imperative that every eligible person gets vaccine shots as soon as possible since it may take a while for tens of millions of American children to be fully protected.
“Vaccines create a cocoon that ultimately protects those who aren’t eligible,” he added.
Anyone who needs help scheduling a free vaccine appointment can log onto vaccines.gov.
(NEW YORK) — The death of former Secretary of State Colin Powell due to COVID-19 complications has sparked conversations about breakthrough deaths among vaccinated individuals.
It would be inaccurate, however, to jump to any conclusions about vaccine effectiveness from a single breakthrough death such as Powell’s, who was 84 years old, immunocompromised and being treated for multiple myeloma, a blood-borne cancer that “in and of itself can lead to compromised immunity,” Dr. Todd Ellerin, director of infectious diseases at the South Shore Medical Center in Massachusetts, told ABC News.
In a statement, Dr. Paul Richardson, the director of clinical research at the Jerome Lipper Multiple Myeloma Center at the Dana-Farber Cancer Institute, said myeloma patients are “not only vulnerable to infection but once infected, they are more prone to serious complications including vascular effects and profound immune dysfunction.”
Dr. Craig Devoe, chief of medical oncology and hematology at Northwell Health in New York, said that myeloma doesn’t just put patients at a higher risk of severe illness but could have also put their immune system at a disadvantage for fighting off COVID-19 even when fully vaccinated “because both the disease and the treatment itself are highly immunosuppressive.”
According to his spokesperson, Powell was fully vaccinated and was being treated for myeloma, which is not curable. He had also recently been diagnosed with Parkinson’s disease, which can itself be debilitating depending on the stage.
According to the Centers for Disease Control and Prevention, there have been roughly 7,000 breakthrough deaths among the 187 million vaccinated Americans, with more than 6,000 over the age of 65 in contrast to the more than 700,000 COVID-19 deaths among the unvaccinated.
“Without question, we can expect deaths,” Ellerin said. “It is much more common in those unvaccinated than vaccinated. But we are seeing breakthrough vaccine deaths, especially in the elderly — patients in their 80s and older — or those who are immunocompromised.”
No one who receives a COVID-19 vaccine is 100% protected from death, but the vaccines have shown to be extremely effective at lowering the risk of getting the disease.
The CDC recently updated its website with data illustrating the fact that vaccines are still dramatically reducing the risk of testing positive or dying of COVID-19 amid the latest delta surge. While there has been a slight uptick in COVID-19 cases and deaths since July 2021, the increase is more pronounced among unvaccinated individuals.
In August, unvaccinated people were 6.1 times more at risk of testing positive for COVID-19 and 11.3 times more likely to die from COVID-19 compared to vaccinated individuals, according to federal data pulled from 16 states and jurisdictions.
“[A breakthrough vaccine death] is not an argument for ‘don’t get your vaccine,'” Ellerin said. “That is an argument for ‘get your vaccine because that’s the best way of reducing your likelihood of death.'”
Additionally, when broken down by age, death rates in every age group were higher among the unvaccinated populations. Older Americans (80+) had the highest rate of deaths among fully vaccinated people per capita, though their risk of death was about 5.7 times lower than their unvaccinated counterparts in the same age group.
Among the breakthrough deaths, the U.S. is currently seeing what Ellerin labels “a precarious triangle” of risk factors — old age, underlying diseases that lead to immunocompromisation and treatments for those diseases — which make individuals more susceptible to severe COVID-19 infection.
Vaccinated people who fall into the intersection of these risk areas should also prioritize non-pharmaceutical interventions, such as masking when indoors and optimizing ventilation, experts say.
Dr. Edward Stadtmauer, director of the myeloma program at the University of Pennsylvania, told ABC News that the best way for cancer patients to prevent COVID-19 infection or limit its severity is to get vaccinated.
“If you have abnormal plasma cells to begin with or are getting therapy that might suppress or damage plasma cells, you can see why that this group of patients may have the most difficulty responding to a COVID infection and responding to vaccines,” he said.
Stadtmauer said he is seeing about 70% of patients with myeloma generate COVID-19 neutralizing antibodies after vaccination.
“If there is any group of patients who should be vaccinated and get a booster, it is this group of patients,” he said.
The Food and Drug Administration on Sept. 22 authorized Pfizer COVID-19 vaccine boosters for people 65 years and older and those at risk. Powell himself was due for the booster shot the same week he fell ill with COVID-19, his spokesperson said.
“None of these are perfect strategies, but you have the best chance of survival,” Ellerin said.
The misuse of the news of Powell’s death to spread misinformation about vaccine failure and discourage individuals from getting vaccinated can be harmful to those immunocompromised, according to experts, who say that in order to protect those with underlying diseases, it is imperative that everyone around them gets vaccinated to curb the spread of COVID-19.
“Hopefully his life and the fact that he believed in vaccination can be a catalyst for many others to get it,” Ellerin said.
(WASHINGTON) — Recipients of the single-dose Johnson & Johnson coronavirus vaccine should not be concerned about the shot’s lower efficacy now that boosters have been recommended, White House chief medical adviser Dr. Anthony Fauci told ABC This Week co-anchor Martha Raddatz.
“I think that they should feel good about it because what the advisers to the FDA felt is that given the data that they saw, very likely this should have been a two-dose vaccine to begin with,” he said Sunday.
The FDA vaccine advisory panel unanimously recommended booster shots for the Johnson & Johnson vaccine Friday. The panel recommended all J&J recipients 18 years and older to get an additional jab as early as two months after the first dose — key differences from their recommendations for the Moderna and Pfizer boosters which were only for Americans 65 and older or in higher risk groups.
The decision came days after early data released from a National Institutes of Health study found that boosting with a different shot than one’s original vaccine appears to be safe and effective. The data, which is not yet peer reviewed, also found that for J&J recipients, antibody levels were higher if they received a Moderna or Pfizer booster rather than a J&J booster.
Raddatz pressed Fauci on whether mixing and matching vaccine boosters for J&J recipients would be a better idea.
“But, Dr. Fauci, the panel was also looking at new data that suggest J&J recipients may be better off getting a booster shot from the more effective Pfizer or Moderna vaccine. Is that a better solution?” Raddatz asked.
“That is true, the data you refer to, that if you boost people who have originally received J&J with either Moderna or Pfizer, the level of antibodies that you induce in them is much higher than if you boost them with the original J&J,” Fauci said.
He went on, “However, you’re talking about laboratory data, which very often are reflective of what you would see clinically. But the data of boosting the J&J first dose with a J&J second dose is based on clinical data. So what’s going to happen is that the FDA is going to look at all those data, look at the comparison and make a determination of what they will authorize.”
Fauci added that the FDA and Centers for Disease Control and Prevention will give people the flexibility to mix and match vaccine boosters based on their individual health situations.
Now that the FDA has recommended J&J boosters for a wider group of Americans, the question turns to when Moderna and Pfizer boosters will be expanded to the general public.
Fauci said that will depend on the data being collected by the CDC and the findings coming in from Israel, which is about a month ahead of the U.S. in its vaccine rollout.
As for vaccines for children ages 5-11, Fauci said the FDA is on track to approve the Pfizer vaccine in early November.
With kids eager to go trick-or-treating and the holidays right around the corner, Raddatz also asked Fauci about his guidance for celebrating the upcoming holidays.
“I believe strongly that — particularly in the vaccinated people, if you’re vaccinated and your family members are vaccinated, those who are eligible, that is obviously very young children are not yet eligible, that you can enjoy the holidays,” he said. “You can enjoy Halloween, trick-or-treating and certainly Thanksgiving with your family and Christmas with your family.”
(CHANNAHON, Ill.) — Christine Kump, of Channahon, Illinois, was newly pregnant with her second child late last year when she felt a lump in her breast.
She said it was in the same spot as a lump she had developed when she breastfed her now 3-year-old daughter, so she brushed it off as leftover scar tissue.
“When you Google it, it says it could be breast cancer, but most likely scar tissue,” Kump, 34, told Good Morning America. “I thought there’s no way I have breast cancer.”
Kump underwent IVF to get pregnant with her second child, so she also attributed the soreness she felt in her breast to side effects from the treatment. When the soreness continued and a burning sensation developed though, Kump went to see her primary care doctor.
“The doctor sent me to do an ultrasound but she wasn’t super concerned,” said Kump. “A few weeks later I went for the ultrasound and then they had me do a biopsy, which I did on Christmas Eve.”
A few days after the biopsy, on Dec. 29, 2020, Kump said her doctor called and told her she had Stage 3 invasive ductal carcinoma breast cancer.
“I was worried that I wasn’t going to make it through the pregnancy,” said Kump, who was eight weeks pregnant when she was diagnosed. “I was thinking I was going to have to write letters to my [3-year-old] daughter Susie for all of her milestones because I wasn’t going to be there.”
Because Kump had a history of cancer in her family, she underwent genetic testing and tested positive for the BRCA1 gene mutation, meaning she was at an increased risk for breast and ovarian cancers.
About 1 in every 500 women in the United States has a mutation in either her BRCA1 or BRCA2 gene, according to the Centers for Disease Control and Prevention (CDC).
Because of her genetic background and because her cancer was so advanced, Kump began chemotherapy once she entered her second trimester of pregnancy, a time that doctors say is safer because the baby’s organs are more developed.
Kump was in the middle of her chemotherapy treatments in May, when she went into early labor.
She gave birth to her daughter, Vivian, on May 30, 2021, about three months before her August due date.
“She decided to show up super early,” Kump said of her daughter, who weighed 2 pounds, 10 ounces at birth and faced complications that come from premature birth. “She was intubated for six days and then was on oxygen until she could breathe on her own.”
Vivian would go on to spend the next 59 days in the neonatal intensive care unit, which was 10 minutes away from the cancer center where Kump received treatment.
“My husband and I were the only ones who were allowed to see her in the NICU,” said Kump, adding that she would go from receiving chemotherapy in the morning to visiting her daughter in the afternoon. “The NICU was the safest place for me to be because it was so clean.”
Kump continued on with chemotherapy after giving birth, completing 16 rounds in all. She finished her last treatment in August, shortly after bringing Vivian home from the NICU.
In September, Kump underwent a bilateral mastectomy.
She will next have to undergo nearly six weeks of radiation treatment, and then will undergo a hysterectomy in January since the BRCA1 gene mutation puts her at a higher risk of ovarian cancer.
Kump said she is sharing her story publicly to both raise awareness of breast cancer during pregnancy, and to encourage women to listen to their bodies and seek help if something feels off.
Breast cancer is found in about 1 in every 3,000 pregnant people, according to the American Cancer Society.
“I was taken very seriously and was diagnosed on the first time, but a lot of women are told it’s just an infection, or it’s something from breastfeeding,” said Kump, who, at 34, was six years below the recommended age of 40 to start annual mammograms. “If you think something is a little off, call your doctor, and if you don’t like the response you get from one provider, get a second opinion. It’s so important that we advocate for ourselves.”
It’s a message echoed by Dr. Mary Ahn, Kump’s breast cancer surgeon at Northwestern Medicine.
“If you’re pregnant and see changes in the breast, the majority of time it is pregnancy-related, but if there is something that feels unusual, get it evaluated. It’s better to be cautious,” she said. “We have be our own advocates, be aware of our bodies and, if there are any questions, address them with a medical professional.”
(NEW YORK) — One dad is going the extra mile for his daughter — literally.
Chris Brannigan, 41, from England, is currently walking 1,200 miles barefoot from Maine to North Carolina in order to fund research on gene therapy for his daughter Hasti, 9, who has a rare genetic disorder called Cornelia de Lange syndrome.
Although the exact number of cases is unknown, the CdLS Foundation estimates that CdLS occurs in 1 in 10,000 live births.
“If you have a rare disease you don’t have the same treatment options or the same quality of healthcare so parents like us have to fight endlessly,” Brannigan told “Good Morning America.” “The sad truth is there’s just no money for rare disease research so it’s left to families like ours to undertake these fundraising campaigns just so we can get treatments for our kids.”
The disorder affects a person’s growth and development, and symptoms include seizures, gastrointestinal problems, autistic-like behavior, heart defects, hearing loss, myopia, and body malformations and other abnormalities.
As a child gets older, more serious symptoms such as anxiety and self-injurious behavior may appear. The CdLS Foundation found that self-injurious behavior occurs in 60% of children and adults with the disorder.
“It gets worse over time,” Brannigan said. “For my wife and I, that was really frightening.”
After Hasti was born, Brannigan said he and his wife, Hengameh, “knew straightaway something was wrong.”
“She looked unhealthy to us,” he said. “She was jittery. She was underweight. When we got her home from the hospital, she had a seizure within the first 24 hours.”
Many of Hasti’s developmental milestones were delayed. Brannigan said she didn’t walk until she was almost 2 years old and didn’t feed voluntarily for the first year of her life.
“There were so many indications but the diagnostic odyssey in the rare diseases world is so long and painful,” he said.
At age 4, Hasti had blood tests done to check for CdLS but the results came back negative, much to the family’s relief.
“I sort of did a little jump for joy because we knew how difficult a condition it was, having researched it after speaking to the doctor,” Brannigan said.
To figure out what could be wrong, Hasti was then enrolled in the 100,000 Genomes Project in the U.K., where they sequenced her genome and looked for common gene errors or mutations. The project took two years, Brannigan said, and the new results showed that she did actually have CdLS.
To manage the disorder, Hasti receives a number of daily treatments, such as hormone replacement therapy via injections and speech and language therapy.
“The cycle of therapies and medical appointments is just never-ending,” Brannigan said.
The fact that CdLS is a rare disease means not much is known about it and how to treat it, which is why Brannigan said he and his wife have had to become experts on the disorder.
“If your child has something terrible like cancer, doctors know what to do because they’re well-practiced in those things,” he said. “But if your child has a rare disease, they just don’t know and that causes a lot of anxiety for parents.”
He added, “Parents have to be experts because no one else is.”
The reality of having a rare disease
After Hasti received her initial diagnosis, Brannigan said he and his wife reached out to numerous doctors around the world to ask them to take a look at gene therapy as a way to help manage the disorder.
“Through online research we came to realize that other rare conditions like spinal muscular atrophy were achieving gene therapies that were transforming children’s lives,” he said, adding that several medical professionals said they would be willing to look into it but it would take “a lot of time” and “cost huge sums of money.”
“When we realized something could be done, we were presented with a question, which was: ‘Do we do this? Do we throw everything we have at our disposal at creating a therapy for Hasti and all the other kids with CdLS? Or do we consciously not do that?'” he said. “As parents I don’t think there’s any other choice you can make. You can’t choose to not help your child.”
The family created the charity, Hope for Hasti, in order to raise the money for research into CdLS gene therapy. After consulting doctors and researchers on how much would be needed to fund the research, they set a $3 million target.
“Raising money has been incredibly hard through the pandemic so my wife and I decided that we should run a fundraising event that would help focus people on not just fundraising but also how difficult it is to manage the life of a child with a rare disease,” Brannigan said.
According to Dr. Wendy Bickmore, director of the MRC Human Genetics Unit at the University of Edinburgh, gene therapy will likely not be a cure but a way to treat some of the disorder’s symptoms.
“Gene therapy encompasses several things,” Bickmore told “GMA.” “It can be adding back in an extra copy of the gene, which has been mutated, or it can be gene editing where you go in with these CRISPR molecular scissors and try and correct the actual spelling mistake of the genome. They both have the ultimate aim of trying to repair the genetic defect.”
All of the preclinical research will be handled by the Jackson Laboratory in Bar Harbor, Maine. According to Dr. Cathleen Lutz, the lab’s senior director, they’re working with mouse models with various genetic mutations, including one with Hasti’s specific mutation. As CdLS can be caused by any number of genetic mutations, a therapy that works for one may not work for another.
“I think we all recognize we’re in uncharted territory, no one is rushing here,” Lutz told “GMA.” “We’re trying to explore the potential for these therapeutics. Even if gene therapy turns out not to be a path forward for CdLS, we’re going to have so much information to plug into new potential therapeutics.”
In a recent statement, the CdLS Foundation announced a partnership with Jackson Laboratory to coordinate research efforts for all genes implicated in CdLS. The goals of the collaboration include advancing basic science around the disorder, creating a centralized repository of existing and new mouse models with CdLS features, and testing various treatment options.
A British army major, Brannigan calls himself the “Barefoot Soldier.”
“The idea of being barefoot is to make it really difficult because Hasti’s condition makes her life incredibly challenging,” he said. “Things that other children find easy, she finds very hard. It seemed only fair that I do something that was equally difficult and challenging.”
Brannigan has already completed one barefoot walk so far. From July 6 to August 18, 2020, he walked 700 miles from Land’s End in England to Edinburgh in Scotland.
“I wounded both of my feet,” he said. “It took weeks for them to heal.”
His current walk will see him do 1,200 miles through 12 states over 53 days. So far, Brannigan’s made it well over halfway and expects to complete the journey in late October.
“It’s been incredibly painful and I think I have nerve damage in my foot,” he said. “I’ve cut my feet. I’ve stood on glass. I’ve had more blisters than I can count. I’ve encountered some really challenging road conditions and it’s slightly dangerous.”
Though Brannigan plans to finish out the walk no matter what, the kindness he’s experienced along the way has kept his spirits up. People have walked with him for parts of the journey, given him food and drink, and even housed him for a night.
“Hasti is a child like every other child who has hopes and dreams and we want her to realize those,” he said. “She deserves to be happy and healthy.”
(NEW YORK) — Even before her stage two breast cancer diagnosis in 2020, Yvonne Llanes knew her strength — and her community.
Llanes, who was first introduced to “World News Tonight” in 2017, had lost both of her legs nearly 16 years ago in a freak accident. For a decade, Llanes was confined to a wheelchair.
But, in 2017, she had made a promise to herself — and her late father — to walk again.
“I was just depressed. I was sad. I was mad at the world and I wanted my life back. I wanted my legs back,” Llanes told “World News Tonight” in 2017.
Llanes found a community at the Hanger Clinic’s Bilateral-Above-Knee Amputee Bootcamp.
With the support of fellow amputees and after months of determination, Llanes pushed herself to get out of her chair and walk across a stage in front of her friends and family.
“I met a group of amputees such as myself that were doing extraordinary things. They were up and they were walking and they were out of their wheelchairs and I was just incredibly amazed and I told myself I want to be like them,” said Llanes.
“I decided enough was enough I was going to get up and get on with life,” she added.
Nearly four years later, Llanes returned to the Hanger Clinic’s Bootcamp for Amputees to celebrate another victory. This time, to announce that she was cancer-free.
She was diagnosed with stage two breast cancer and underwent surgeries in 2020 and 2021. Across the country, her Bootcamp family was there for her by sending photos and wearing “Yvonne Strong” T-shirts.
“All my amputee friends here have stood behind me through this diagnosis and have been very supportive of me 100%, and I just appreciate it tremendously,” said Llanes on Thursday.
Llanes told “World News Tonight” Friday that the community’s motto, “Decide to rise,” can be applicable to anyone.
“Life is going to throw obstacles at you — do not let those obstacles get in your way,” she said. “Have faith, have courage, have hope, overcome those obstacles and never forget to decide to rise.”
