leukemia

Hundreds of thousands of people may have been exposed to contaminated drinking water at Cape Lejeune from the 1950 to the 1980s. The Jacksonville base, covering 156,000 acres in eastern North Carolina, remains in operation today with a safe water supply. In this 2016 photo, members of the US Marine Corps and the US Navy, along with civilians, participate in a ceremony on base.

Marine veterans petition for medical health registry for Camp Lejeune toxic water victims

March 16, 2021 by Greg Barnes

Marine veterans petition for medical health registry for Camp Lejeune toxic water victims - North Carolina Health News

The veterans say a registry could uncover more medical conditions and lead to more compensation for people harmed by tainted drinking water at the Marine Corps base.

By Greg Barnes

In the yellowed photograph from 1968, a young Lisette Partain sits on a hospital bed cradling her newborn baby. A glass of water and a partially filled baby bottle rest on a bedside table.

Mike Partain, the infant in the picture, believes his misery began at conception Although it wouldn’t manifest itself for decades, Partain believes the water glass and the baby bottle contained toxins that for years had been leaching into the drinking water for Marine Corps Base Camp Lejeune in Jacksonville.

Partain, like hundreds of thousands of other people, drank and bathed in the water, never having any knowledge of the toxins it contained.

Thirty-nine years after his birth, doctors diagnosed Partain with male breast cancer, a rare disease, especially for someone so young. The cancer remains in remission today, only after a radical mastectomy, months of chemotherapy treatments and a lifetime of continued suffering.

Partain could be considered among the lucky. There’s a cemetery at Camp Lejeune called “Baby Heaven.” Here, you’ll find gravestones of babies who were born with leukemia, babies born without craniums, and babies born with cleft palates and spines protruding out of their backs. They were born – and many died — with unimaginable birth defects.

Partain is among at least 900,000 Marine Corps veterans, their family members and civilian employees who were aboard Camp Lejeune from 1953 until 1987. That’s the timeline the government confirms the pollution occurred.

The U.S. Department of Veterans Affairs now recognizes the toll the contamination has caused and is providing benefits and compensation to some of the afflicted. But Partain and dozens of Marine Corps veterans continue to push back, fighting for more relief for themselves, their family members and everyone else who has been sickened by the toxic water and the government’s alleged attempts to cover it up.

Partain, who entered this fight in 2007, said the Marine Corps leadership has yet to sit down and address their grievances.

Partain and the veterans have won battles along the way, though. Through their efforts, the Department of Veterans Affairs now provides compensation and benefits to qualifying veterans for eight presumptive diseases linked to the contaminated drinking water.

Lisette Partain cradles her newborn son, Mike, in a hospital on Marine Corps Base Camp Lejeune in 1968. Mike Partain believes the toxic water he drank as an infant caused his male breast cancer 39 years later.

But the war is far from over. The veterans believe that the contamination has caused far more diseases and that far more people should be compensated.

Partain plans to be in Kentucky on Wednesday as part of a gathering of advocates who will present Senate Minority leader Mitch McConnell, (R-Kentucky) and other federal and state lawmakers with a petition signed by more than 49,000 people. Organizers say they hope the petition leads to a Camp Lejeune medical health registry that scientists would use to help uncover additional diseases that can be tied to the contaminated water and qualify more people for compensation.

In and of itself, the health registry is just another step in a battle that some Marine Corps veterans have been waging for nearly 25 years. Those Marines say they don’t care if it takes another 25 years, they aren’t going to stop.

“You can’t just dump s**t and think it goes away in the ground and not take responsibility for your actions,” Partain said. “I mean think about it, they poisoned a million Marines and their families. What would you do if it had been you?”

‘My daddy’s hurting, too.’

Marine Corps veteran Jerry Ensminger is the granddaddy of them all in this fight.

Ensminger’s daughter, Janey, was diagnosed with leukemia in 1983 and died two years later, at the age of 9.

As she neared death, doctors told Janey that she needed morphine to help ease her pain. Janey had long refused to take the drug. It made her feel weird and sleepy. She finally relented, on one condition.

“I want some for my daddy … My daddy’s hurting, too,” Ensminger quoted his daughter as saying for a documentary on the Camp Lejeune water crisis titled “Semper Fi: Always Faithful.”

Ensminger wouldn’t learn about Camp Lejeune’s toxic water until a dozen years after his daughter’s death when he heard CBS News anchor Dan Rather say on national television that scientists believe there is a link between the contamination and childhood leukemia.

Ensminger said he stopped dead in his tracks.

From that day forward, Ensminger has been the driving force behind the fight to reveal the extent of the contamination and its effects on the Marine veterans, their family members and the civilian employees who were poisoned. He co-founded an advocacy group called “The Few, The Proud, The Forgotten.”

Ensminger lives near White Lake, about halfway between Fayetteville and Wilmington. He’s 68 now and still oversees a nearby farming operation.

He said he’s been to Washington to campaign on behalf of his fellow Marine veterans so many times that he knows every bump along Interstate 95. It takes more than five hours to get from his home to Capitol Hill.

“I did it all out of my own pocket,” Ensminger said. “I would make day trips to Washington, D.C. I’d get up at 3:30 in the morning, get ready, hang my jacket and tie up on the passenger side of my truck and I’d drive straight through. I’d set my appointments up late in the morning or early in the afternoon so that I missed the morning rush hour, have my meetings and get the hell out of Washington and drive all the way back home.”

Ensminger’s efforts led to the Janey Ensminger Act, the most significant piece of federal legislation to date on compensation for the Marines, their families and civilian employees. The act, which President Obama signed in 2012, became law more than 30 years after the contamination at Camp Lejeune was first discovered and 15 years after Ensminger learned what is thought to have caused Janey’s death.

Chemicals contaminated drinking water wells

Mike Partain was just 4-months old when his father, a Marine Corps officer, got orders to deploy to Vietnam. His father left Camp Lejeune, taking his family with him.

Despite his short time on the base, Partain is convinced that his breast cancer was caused by the contaminated water at Camp Lejeune. Science — and at least 120 men who once lived on Camp Lejeune and now have breast cancer — back him up. Male breast cancer is rare. Only about 2,300 men in the U.S. will be diagnosed with the disease in a year, compared with more than 250,000 cases of breast cancer diagnosed in women annually.

Scientists believe some of the contamination on the Marine Corps base started in 1953, when the dry cleaning industry began widely using trichloroethylene (TCE) and tetrachloroethylene (PCE) to clean clothes. Among the businesses using those cancer-causing chemicals was ABC Cleaners, which sat along the main boulevard just outside Camp Lejeune.

ABC cleaners discharged thousands of gallons of the hazardous solvents into its septic system. The chemicals leaked from the tank and seeped into the groundwater, eventually winding up in the two wells that supplied drinking water to 6,200 residents of a Marine housing complex called Tarawa Terrace.

The EPA discovered trichloroethylene in Camp Lejeune’s water in 1980. A study from 1981 for another area of the base called Hadnot Point said, “Your water is highly contaminated with chlorinated hydrocarbons.”

Jerry Ensminger, Mike Partain and their allies have have built archives of thousands of pages of documents demonstrating the length, severity and extent of drinking water contamination at Camp Lejeune. This annotated map shows contaminated wells within the Hadnot Point Industrial area on the base, which once included a on-base refueling station. TCE stands for trichloroethylene.

Three years later, extremely high levels of another chemical — the carcinogen benzene — were detected in the base’s drinking water at Hadnot Point, along with PCE, TCE and other toxins. In all, the EPA lists dozens of hazardous substances found at Camp Lejeune. In all, three separate water systems on the base were found to be contaminated.

ABC Dry Cleaners was only partly to blame. The benzene contamination likely happened because more than a million gallons of fuel leaked over the years from the base’s fuel farm at Hadnot Point. Other sources also contributed, including leaking underground storage tanks, industrial area spills, and leaching from a toxic waste dump. The EPA placed Camp Lejeune on the Superfund program’s National Priorities List in 1989. Cleanup continues today.

Ensminger and other veterans contend that the Marine Corps and the federal government have routinely tried to cover up the contamination and its deadly consequences. The benzene, for example, was discovered in 1984. In a 1997 report, the Agency for Toxic Substances and Disease Registry (ATSDR) did not include benzene and did not acknowledge its presence until a dozen years later.

And the base didn’t start officially notifying former Camp Lejeune residents about the toxic water until 1999. The contamination is said to be among the worst in the country.

Since then, the ATSDR has done multiple studies on the effects of the contamination. Among its findings:

A possible association between PCE, TCE and other chemicals and male breast cancer. The results were based on small numbers of exposed cases, and more evaluation is underway.
Suggested associations between in utero exposure to PCE, TCE and benzene in Camp Lejeune drinking water and adverse birth outcomes. Another ATSDR study found higher rates of birth defects.
Camp Lejeune had higher mortality rates for Marines, Navy personnel and civilian employees than Camp Pendleton, which did not have contaminated water and was used as a comparison.

The ATSDR is now conducting a cancer incidence study to determine whether the Camp Lejeune contamination is associated with higher rates of specific types of cancers.

Ensminger supports his fellow Marines’ attempts to establish a health registry to identify more victims of Camp Lejeune’s water. He said he plans to be in Kentucky when the petition is presented to McConnell and the other lawmakers.

But Ensminger questions whether a health registry will be truly effective because he said government officials put little stock in registries that are self-reported. He believes the ATSDR cancer study will have far more impact.

“I honestly believe that the Camp Lejeune cancer incidence study is going to become the most meaningful study that has ever been done on Camp Lejeune,” Ensminger said. “I’m a firm believer that it’s going to be the final nail in the coffin of chlorinated solvents.”

But that study could still be years in the making. In the meantime, Marines who served their country continue to die. According to a document from August 2016, the VA estimated that of the 862,468 Marines and Reservists who were on board Camp Lejeune during the time of the contamination, 328,125 of them will have died by the beginning of 2018.

‘Service members… were harmed.’

The Janey Ensminger Act that President Barack Obama signed into law provides disability benefits and health care for any veteran who didn’t receive a dishonorable discharge and served at Camp Lejeune or Marine Corps Air Force Station New River for at least 30 days from August 1953 through December 1987.

The act was amended in 2017 and again in 2019, after North Carolina’s two U.S. Senators, Republicans Richard Burr and Thom Tillis, introduced legislation requiring ATSDR to review the diseases linked to the Camp Lejeune contamination every three years and to determine the extent that they may have been caused by toxic chemical exposure.

“For decades, service members and their family members who lived and worked at Camp Lejeune, NC, were harmed by exposures to toxic substances,” Tillis and other co-sponsors of the 2017 bill wrote. “In the decades since, these men and women who served our nation have had to fight to receive the care to which they are entitled as a result of their service to our country. Veterans and their family members should not be further harmed by the VA’s failure to accept ATSDR’s findings.”

To qualify for benefits and compensation under the act, veterans must have one or more of eight presumptive conditions — adult leukemia, aplastic anemia and other myelodysplastic syndromes, bladder, kidney or liver cancer, multiple myeloma, non-Hodgkin’s lymphoma and Parkinson’s disease.

Veterans and their family members are entitled to payouts to cover out-of-pocket health care benefits for a total of 15 diseases – some of which overlap with the presumptive eight.

Partain and Brian Amburgey, a leading organizer for the health registry petition, believe it’s unfair and unjust to exclude family members from full benefits and compensation for the 15 presumptive diseases. They also believe that a health registry could prove that the contamination at Camp Lejeune has caused many other diseases.

Mike Partain – Camp Lejuene water — Mike Partain poses during a photo shoot for a calendar displaying people who drank toxic water at Marine Corps Base Camp Lejeune and contracted male breast cancer. Contributed photo: Mike Partain

“There’s a lot of other health issues that a lot of the veterans and their family members have that we cannot get them to do anything for us,” said Amburgey, who was 18 years old when he came aboard Camp Lejeune in 1984. He lives in Kentucky now.

When NC Health News interviewed Amburgey in early February, he said he was scheduled to have an electroencephalogram — or EEG — the next day. Amburgey said he has issues with memory loss, tremors, discolored skin and brittle teeth that break. None of those conditions is covered by the VA. Amburgey said the EEG ruled out seizures, and doctors aren’t sure what is causing his problems. He goes back for more testing in June.

Amburgey and Partain believe that many other health conditions — esophageal cancer and skin problems, for example — should also be on the list and that qualifying family members should get the same benefits and compensation as the veterans themselves.

“Once again, if we had the data that we can collect — the numbers of people diagnosed — we can get that to the scientists and then take a look at the scientific answer. Is this condition one of these outcomes for exposure at Camp Lejeune?” Partain said.

He said a health registry would also be a tremendous help because Marines stayed at the base only a short time before deploying and then going back home to places scattered across the country.

“When you have a health registry, that helps bring all of these people together,” said Partain, who lives in Florida. “The health registry would help do that because, you know, if I’m in Florida and there’s a guy in Wyoming that has male breast cancer … a scientist is going to see that and be able to connect them together.”

Amburgey pointed out that the VA has approved health registries for veterans who suffered from the use of the herbicide Agent Orange in Vietnam, burn pits in Iraq and Afghanistan, and other contamination exposure during the course of wars.

Roadblocks to just compensation

Another and perhaps larger issue is that few veterans who enrolled in the VA’s program for compensation for the 15 presumptive diseases are actually receiving it. A transcript from a Sept. 1, 2020, Camp Lejeune Community Assistance Panel bears that out.

In the transcript, Mark Heroux, supervisor at Camp Lejeune Family Medical Program, said that of the 71,397 veterans who had enrolled in the program for benefits related to the contamination, only 3,570 — or 5 percent — were treated for one or more of the 15 medical conditions.

Part of the problem, Ensminger, Partain and Amburgey all pointed out in separate interviews, is that the VA has contracted with doctors — so-called subject matter experts — to determine whether a Marine veteran should receive compensation for diseases presumed to be caused by the contaminated water. Some of those doctors had less than sterling reputations. Some just rubber-stamped their denials, the men said.

Another major hurdle in the fight is a 2015 Supreme Court ruling that, although not specific to Camp Lejeune water contamination, upheld North Carolina’s 10-year limit on how long people have to bring certain pollution-related lawsuits,

So Partain and the veterans are again fighting back, this time with the Camp Lejeune Justice Act. The act, introduced by Tillis in September, would essentially overturn the Supreme Court’s decision.

That decision excludes Partain and thousands of Marine Corps veterans from compensation because they did not bring a lawsuit within 10 years of learning about their qualifying disease. Partain, now 53, learned about his breast cancer at age 39. As it stands now, he has lost his opportunity to file a lawsuit.

Partain said he will never forget the day his wife gave him a hug and felt a lump. Partain said he knew it was there. He just figured it was a cyst that would go away.

His wife insisted that he get it checked out, and days later the diagnosis of male breast cancer came back.

“It was a hug that saved my life,” said Partain, whose mission since then has been to fight for the well-being of others in a battle that has dragged on for decades.

photo shows untidy and dirty buckets and pesticide containers in a dark shed

$2 billion Roundup verdict may be just the beginning

May 30, 2019 by Greg Barnes

$2 billion Roundup verdict may be just the beginning - North Carolina Health News

The huge jury award may have opened the door to class-action lawsuits, but it doesn’t settle the question: Does glyphosate, the main ingredient in Roundup, cause cancer?

By Greg Barnes

Class-action lawyers have been circling on social media since a jury decided earlier this month that a California couple deserves more than $2 billion for the cancer they say was caused by using Roundup on their lawns for more than three decades.

The verdict against Monsanto, the maker of the country’s most widely used herbicide before it was bought by Bayer last year, was the third since last summer. An estimated 11,000 more cases are waiting in the wings. Judging by the number of lawyers on social media hoping to make it rain, that number seems destined to climb.

“Have you been diagnosed with non-Hodgkin’s lymphoma from Roundup?” a Charlotte law firm asks in one of scores of ads circulating on the Internet. “Roundup’s active ingredient glyphosate has been linked to an increased risk of developing … lymphatic cancers.”

The assessment that glyphosate causes cancer continues to be the subject of fierce debate among scientists, lawyers, regulators and lawmakers on Capitol Hill.

Lawyers for the couple who won the $2 billion verdict based their lawsuit partly on a 2015 study by the World Health Organization’s International Agency for Research on Cancer, which found that glyphosate is “probably carcinogenic to humans.”

But as recently as last month, the U.S Environmental Protection Agency announced it “continues to find that there are no risks to public health when glyphosate is used in accordance with its current label and that glyphosate is not a carcinogen.”

The EPA contends that its “cancer evaluation is more robust than IARC’s evaluation,” and more transparent.

Studies inconclusive

Other research, including the Agricultural Health Study, have also found no link between glyphosate and cancer, as long as the chemical is used properly.

For more than a quarter of a century, the Agricultural Health Study has tracked about 90,000 farmers and their spouses who apply pesticides in North Carolina and Iowa. The study is a collaborative project of the National Cancer Institute, the National Institute of Environmental Health Sciences, the EPA and the National Institute for Occupational Safety and Health.

Conclusions based on the study were published in 2017 in the Journal of the National Cancer Institute. The study found that “no association was apparent between glyphosate and any solid tumors or lymphoid malignancies overall, including NHL (non-Hodgkin’s lymphoma) and its subtypes. There was some evidence of increased risk of AML (acute myeloid leukemia) among the highest exposed group that requires confirmation.”

John Allran, an environmental toxicologist with the N.C. Department of Agriculture and Consumer Services, calls the Agricultural Health Study one of the world’s most “powerful epidemiology studies.”

Allran is among those who believe the risks of applying glyphosate are negligible, as long as farmers follow the labels.

“Glyphosate is probably the most scrutinized, intensively evaluated pesticide regarding cancer risk,” Allran said.

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Yet Robin Tutor, director of the North Carolina Agromedicine Institute headquartered at East Carolina University, and many others believe that the research involving glyphosate remains inconclusive. The institute promotes health and safety of farmers, fisherman and foresters and their families through research, education and prevention.

Alexis Luckey, executive director of Toxic Free NC, believes the debate continues largely because of a lack of longitudinal studies.

“We may not know the full answer to that question about glyphosate’s ubiquitous presence in our lives for a few more decades, as happened with DDT,” said Luckey, whose nonprofit organization advocates for a precautionary approach to pesticides.

The insecticide DDT, which is listed by the IRAC as a possible carcinogen, was used for decades in the United States before the EPA banned it in 1972 because of its potential health risks to people and wildlife.

Luckey said the U.S. regulatory system evaluates chemical safety on a risk-assessment model, basing many of its conclusions on the toxicological evidence submitted by chemical manufacturers. Regulatory testing does not account for the toxicity of pesticides after they break down, the effects of multiple kinds of exposures over time or how non-active ingredients may impact toxicity, she said.

“Farmers, pesticide applicators, developing children, and pregnant women will pay the cost of being human guinea pigs,” Luckey said in an email. “Many people assume that because something is on the market, it has been tested for safety. There are more than 80,000 chemicals currently used in the U.S., and most of these haven’t been adequately tested for their effects on human health.”

Luckey’s organization was among those that tested for pesticides in food at the nation’s largest grocery store chains — Walmart, Costco, Kroger and Albertsons. Among the findings, released in February, were that glyphosate was detected in all samples of oat cereal and pinto beans purchased in 15 cities, including Raleigh.

The average level of glyphosate found in cereal samples was more than twice the level set by scientists at the Environmental Working Group for lifetime cancer risk for children, according to Toxic Free NC.

Clayton farmer’s cancer

Jay Vinson, a 10th-generation farmer who lives near Clayton, doesn’t know whether his testicular cancer was caused by a long exposure to pesticides.

He rattled off some of the pesticides his family uses — glyphosate, Prefix, chlorpyrifos, and many others — on farming operations that span about 1,500 acres in Johnston County.

Vinson graduated from the University of North Carolina at Chapel Hill with a bachelor’s degree in business in 2004. He worked for a year in the banking industry before he decided that his real love was farming.

About eight years after returning to the fields, Vinson was diagnosed with cancer, undergoing surgery and weeks of painful chemotherapy. His doctor said Vinson is in remission now, at age 38. He returns to the doctor every three months for a checkup.

a farmer stands nxt to his tractor, he says he uses pesticides more carefully after being diagnosed with cancer — Jay Vinson, a farmer near Clayton, doesn’t know if his testicular cancer was caused by pesticides, but he takes more precautions now. Photo credit:

A study published in 2011 found that British pesticide users may have an increased risk of non-melanoma skin cancer, testicular cancer and multiple myeloma. Vinson said his father suffered from skin cancer, and a neighboring farmer has testicular cancer.

Although there is no proof that pesticides caused Vinson’s cancer, there is ample evidence that some pesticides are so dangerous to human health that they have been banned or restricted to narrow uses.

Vinson has used one of those pesticides — chlorpyrifos — for years. The EPA banned chlorpyrifos in 2015. The Trump administration lifted the ban, only to see a federal appeals court rule against that decision last month. Research shows the chemical has the potential to damage brain development in children. Earlier this month, California banned the use of chlorpyrifos.

Vinson said he still uses the pesticide because it is so effective in killing fire ants and other pests.

He said he has been much more careful in handling pesticides since his cancer diagnosis, but he admits that there is no way to prevent himself from coming into contact with the chemicals, especially when he is in a hurry.

“There is no safe way to use chemicals,” Vinson said.

It’s not for lack of trying. Workers at the North Carolina Agromedicine Institute, the N.C. Department of Agriculture and countless other agencies across the country devote their lives to keeping people safe from pesticides.

That in itself illustrates the health dangers many of these chemicals pose.

Farmers are healthier

The Agricultural Health Study has found that the 90,000 participants in its study are, overall, healthier than the general population, at least partly because they smoke less and are more physically active.

The study says participants are less likely to die from heart disease, cancer, diabetes and lung and liver diseases.

That said, the study did point to pesticides that are known to cause disease. It found that farmers who used the pesticides rotenone or paraquat developed Parkinson’s disease about 2.5 times more often than those who never used either pesticide. Both chemicals have been banned in other countries, but not in the U.S.

Organic farming

With more research into the effects of pesticides on humans and the environment comes more opposition to their use from environmental groups. The Natural Resources Defense Council is calling for a ban of “all unsafe pesticide uses,” citing the glyphosate and chlorpyrifos issues, as well what it says is the loss of more than 40 percent of honeybee colonies since 2017.

Luckey, the director of Toxic Free NC, said the issue of pesticide misuse worsens as farmers use ever more chemicals to combat the growing problem of weed and insect resistance.

Luckey sees a huge economic opportunity in expanding organic farming. She believes such a shift away from pesticides would be scalable, pointing to successes in eastern North Carolina.

But while opportunities exist in growing more organic food in North Carolina, ridding the state of pesticide use seems little more than a pipe dream today. North Carolina has an estimated 48,000 farms, all of which use pesticides. In 2015, those farms contributed $12.6 billion to the state’s economy.

Besides killing weeds, harmful insects and plant diseases, pesticides substantially increase farmers’ yields. Without pesticides, more than half of the world’s crops would be lost to pests and diseases, according to CropLife International.

Vinson said he likes the idea of organic farming, he just doesn’t see it as feasible on his farm. For one thing, he said, he’d have to take his fields out of production until the pesticide residue is gone. That could take years.

“I know we need pesticides, and I know we need safe restrictions, and I think we are getting there,” he said.

A woman gestures at a video screen which shows the patient bed in the next room over.

Lead-lined Room for Treatment of Rare Childhood Cancer Opens in Charlotte

December 17, 2018 by Yen Duong

Lead-lined Room for Treatment of Rare Childhood Cancer Opens in Charlotte - North Carolina Health News

Levine Children’s Hospital unveiled a new lead-lined room for treating patients with neuroblastoma, a rare childhood cancer.

By Yen Duong

It’s hard enough being a parent of a child with cancer—traveling for treatment can worsen the ordeal. Erin Santos remembers three weeklong trips from Charlotte to Philadelphia for a special treatment, called MIBG (metaiodobenzylguanidine) therapy, which extended her daughter Isabella’s life by 10 months.

“[We] had no visitors so when she was asleep, I would sit out in the hallway and read a book alone,” Santos said. “I didn’t know a soul there. To be able to have family and friends come up and visit just to give the parent a break every once in a while… makes treatment so much easier for everybody.”

In 2009, Santos founded the Isabella Santos Foundation to fund research and increase awareness of neuroblastoma, the third-most common childhood cancer after leukemia and brain and spinal cord cancers.

A slightly blurry, yellowed window into a room shows a patient bed covered in plastic. — A view through the lead-lined window from the parent room to the room where patients will remain throughout their MIBG treatment. Photo credit: Yen Duong

A $1 million gift from the Isabella Santos Foundation covered the costs for Levine Children’s Hospital in Charlotte to construct a special suite of rooms for MIBG therapy. Construction finished at the end of November, and the rooms will be ready for patients within the next month, said nurse practitioner Dawn Bartock, who is Levine’s clinical lead for MIBG therapy.

The hospital built more than 20,000 pounds of lead into the walls, door and windows of the patient room to protect others from the radiation after the MIBG therapy. Every surface besides the bed linens are also covered in plastic—if radiation contaminates any object, the hospital must replace it, Bartock said.

A few times a day, the parent can visit their child by opening the 900-pound door which includes a solid inch of lead. Otherwise, they stay in the parent room, which includes a lead-lined window to the patient room, a speaker system to talk between the rooms and a TV system to play video games, movies or video chats for visitors with the matching TV in the patient room.

When Santos visited the Children’s Hospital of Philadelphia in 2011, she stayed in the same lead-lined room as Isabella, exposing herself to potentially dangerous radiation which targeted Isabella’s neuroblastoma.

“They actually put the parent in the room with the child and you slept behind a lead shield,” Santos said. “You are getting the radiation as well as the child. For [Levine Children’s Hospital] to take the parents into account when building this room, and making sure the parents were safe, I think it’s such a huge thing.”

Though MIBG therapy is expensive, Bartock said that so far, insurance has covered patient treatments and parent room stays, which means one less thing for parents to worry about.

“Everything is radioactive”

Neuroblastoma affects about 800 children in the U.S. each year, according to the American Cancer Society website, and is the most common cancer found in babies. Usually, the childhood cancer is treated with surgery, radiation therapy with X-rays and chemotherapy, according to Cancer.gov.

If those treatments don’t work, or if the cancer comes back, doctors turn to MIBG therapy.

In MIBG therapy, radioactive iodine drips through the patient’s IV line. They infuse the iodine for 90 minutes, then the patient must stay isolated for 3-5 days until their radiation levels drop low enough to safely leave, said Bartock.

An IV stand in front of a patient bed; everything in the room is covered in clear plastic. — Plastic lines all surfaces in the special lead-lined room at Charlotte’s Levine Children’s Hospital for MIBG treatment. Photo credit: Yen Duong

The therapy emits two types of radiation–one type is absorbed by the lead lining the walls, and the other type targets the tumor cells and kills them, Bartock said.

“Their urine is radioactive, their sweat, their tears, their blood, everything is radioactive,” Bartock added.

Right now, MIBG is only used in “compassionate care” settings, to extend the patient’s life and make them more comfortable, Bartock said. A PubMed search showed that MIBG therapy has been used at least since the 1980s with varying dosages and outcomes. Research is still ongoing.

With slightly lower blood counts for a few weeks as the only major side effect, MIBG holds promise as an “upfront” therapy and is currently in clinical trials, Bartock said.

“After the first treatment, 90 percent of her cancer was gone,” Santos said. “She watched a movie while she was receiving the treatment. […] You think of all the treatments you give your kids between chemo and these experimental drugs that are just so awful and painful and make them sick. And this was nothing, she felt nothing, and [the MIBG treatment] got rid of so much of her cancer. It’s crazy.”

Clinical trials in the future

After Levine treats three patients in the new MIBG room, the hospital will be eligible to join clinical trials hosted by the Children’s Oncology Group, the world’s largest organization for childhood cancer research, said Oesterheld. Currently, patients can enroll in MIBG neuroblastoma Phase III trials at Duke and UNC, where there are also lead-lined rooms according to the online federal database at clinicaltrials.gov.

A ceiling tile shows small dots of light for stars and a Saturn made of dots of light. — As a special touch, planets and shooting stars adorn the ceiling of the special lead-lined patient room at the Levine Children’s Hospital. Patients can choose their own sheet patterns, and parents will receive gift baskets from the Isabella Santos Foundation. Photo credit: Yen Duong

One of the trials is testing the efficacy and safety of using MIBG as a first step therapy instead of using it after chemotherapy and other treatments and will conclude in 2022. If it is successful, then MIBG may be offered before neuroblastoma recurs.

Only 18 to 21 sites in the U.S. offer MIBG treatment for neuroblastoma, Oesterheld said. Many, including hospitals in Ohio, Chicago, Wisconsin and Texas, incorporate a separate parent room as a suite, like the new room at Levine’s. But some only have a “clean corner” or anteroom for parents.

Oesterheld anticipates that most neuroblastoma patients will come to Charlotte from some of the more than 200 Children’s Oncology Group hospitals. When the suite is not being used for MIBG treatment, it will be used as a normal patient room, he said.

Since neuroblastoma frequently recurs, he estimated that about 200 patients in the U.S. at any given time could use MIBG treatment.

“If it relapses, it’s much harder to treat,” Oesterheld said. “Five to 10 years ago, we thought it was universally fatal when it relapses. And now with MIBG and some other clinical trials that we’re doing, we’re finding that we are able to cure some of those children.”

Legislators and Lobbyists Donate Samples for Bone Marrow Registry

August 6, 2015 by Editor

Legislators and Lobbyists Donate Samples for Bone Marrow Registry - North Carolina Health News

By Rose Hoban

State employees rallied to support one of their own on Wednesday at the legislative building in an effort to save the life of a lobbyist who represents the State Employees Association of North Carolina.

Jim Blaine, Senate leader Phil Berger's Chief of Staff, swabs inside his cheek to collect a DNA sample for the bone marrow registry. Blaine helped to organize Wednesday's registry event. — Jim Blaine, Senate leader Phil Berger’s chief of staff, and Susan Vick, a lobbyist for Duke Energy, swab the insides of their cheeks to collect DNA sample for the bone marrow registry. Blaine helped organize Wednesday’s registry event. Photo credit: Rose Hoban

In June, Kevin LeConte was feeling run down and had a cut that wouldn’t heal. So he went to the doctor.

“We were down here lobbying, and he called and said, ‘I need to go to the hospital,’” recalled Ardis Watkins, a fellow SEANC lobbyist. “He had been in just two days before and his counts at that point were critical.”

“When he asked the oncologist if he could have a day or two before he went to UNC,” Watkins said, “the answer was absolutely not, the ambulance was coming.”

That’s why Watkins organized a bone marrow transplant registry day at the General Assembly building Wednesday, where more than 200 people submitted swabs to be part of a nationwide database of people willing to donate bone marrow or stem cells.

Too few

LeConte is the second high-profile figure in the Triangle who is now looking for a bone marrow transplant to treat his leukemia. Orange and Chatham county Superior Court Judge Carl Fox is also looking for bone marrow after being diagnosed with another form of blood cell cancer in April.

And it only takes a swab in the mouth to become part of the registry, said Crystal Navarro, a donor organizer from Delete Blood Cancer.

“The swab goes onto a registry, and the person’s information will sit on the registry,” Navarro explained. “If they are found as a match for someone, then what will happen is we’ll contact them and they may be asked to donate either stem cells or bone marrow if there’s a match.”

Bone marrow is used to treat blood cancers such as lymphoma, leukemia and myeloma, along with other blood disorders such as aplastic anemia and sickle cell anemia. The blood-forming cells in bone marrow replace a patient’s unhealthy marrow cells with healthy ones.

Crystal Navarro pulls out a sample collection kit from her "swab bag" at Wednesday's bone marrow registry event at the legislative building in Raleigh. — Crystal Navarro pulls out a sample collection kit from her “swab bag” at Wednesday’s bone marrow registry event at the legislative building in Raleigh. Photo credit: Rose Hoban

A complication for Fox, who is black, is that there are currently too few blacks on the registry. So a number of black lawmakers were rubbing the inside of their cheeks with swabs to give a sample.

“We continually strive to increase the size and diversity of the Be The Match Registry to improve all patients’ chance for a cure,” Alyse Brunella, a press representative for the national registry, wrote in an email.

According to Delete Blood Cancer, about 14,000 people need the donations annually, but only about half can get one, in part because the matching criteria are stringent and there’s often not a match to be found.

Delete Blood Cancer and other organizations recruit and collect donations to be included in the Be The Match Registry.

Came together quickly

Watkins said the event came together quickly once she and her colleagues learned of LeConte’s need for bone marrow. Legislative leaders loaned their support to the effort.

She said House Speaker Tim Moore (R-Kings Mountain) and Senate President Pro Tempore Phil Berger (R-Eden) were at the 9 a.m. kickoff inside the legislative building on East Jones Street.

“That was one of the most inspiring sights I’ve seen around here; everybody was just so invested in it,” Watkins said.

Easy process

Donors must be between the ages of 18 and 55 and in generally good health. Cancer survivors and people with chronic diseases such as diabetes or chronic infections such as HIV or hepatitis are not allowed to donate.

When a person signs up, DNA from cells taken during a cheek swab are analyzed for HLA antigens on the cell, markers known as a person’s “genetic identity.” Eight different markers on the cell are recorded.

Sen. Joel Ford fills out the paperwork for his donor swab. Organizers said African Americans and other minority donors are desperately needed for the national registry. Photo shows an African American man filling out paperwork on a table. — Sen. Joel Ford (R-Charlotte) fills out the paperwork for his donor swab. Organizers said blacks and other minority donors are desperately needed for the national registry. Photo credit: Rose Hoban

Then if a patient needs donor marrow, the registry aims to match at least seven of the eight markers.

“A sibling who is an eligible donor and a full HLA match is the preferred option in most cases,” Brunella wrote. “However, 70 percent of patients will not have a family donor match and can turn to the Be The Match Registry to search for an unrelated donor or cord blood unit.”

If a donor is matched, the procedure for taking the bone marrow is a simple outpatient procedure, Navarro said.

“If you put your hand on your hip, where your thumb rests [is] where we’ll extract it from your hip with a syringe,” she said.

Most people end up with a sore hip for a few weeks.

“It varies per person, but you do recover, and you’ve saved someone’s life,” Navarro said.

Cancer Drug Parity Bill Passes House

May 10, 2013 by Rose Hoban

Cancer Drug Parity Bill Passes House - North Carolina Health News

After long discussions in committee and on the floor of the House of Representatives, a bill to lower the cost of oral cancer medications gets a vote.

By Rose Hoban

A bill aimed at reducing the cost burden for people with cancer who take oral medications made it through a vote on the floor of the state House of Representatives Thursday afternoon, getting it one step closer to law.

Statewide, the Medication Assistance Program gave uninsured North Carolinians access to about $100 million in free medications last year. Photo courtesy of AnoLobb, Flickr Creative Commons — Photo credit, anolobb, flickr creative commons

Patients receiving cancer chemotherapy traditionally get their treatments via intravenous infusions or injections in their doctors’ offices. But with new medications that are administered orally, patients don’t need to go to a doctor’s office.

But they’re often subject to sticker shock when they pick up their medications, which can run in the hundreds, if not thousands, of dollars per dose.

“What this bill does is seek to provide parity in the way that plans that provide this coverage actually get the delivery of the medicine to the one that’s sick,” said bill sponsor Rep. David Lewis (R-Dunn) during a House Insurance Committee meeting on Tuesday. “It doesn’t require plans to add stuff.”

He argued that the bill was not a mandate – that it only requires that prices for oral drugs be “no less favorable” than those negotiated for IV treatment.

Though the bill seemed like an easy, feel-good vote, it both elicited emotional support and raised objections from both sides of the aisle.

Rep. Robert Brawley (R-Matthews) spoke of losing younger men in his family to cancer.

And during floor debate Thursday night, the voice of Rep. Pat McElraft (R-Emerald Isle) cracked as she talked of her brother’s struggle with brain cancer.

“I saw the costs for those hospital stays for the IV therapy, and believe me, they were very, very expensive to his insurance company,” she said.

McElraft contrasted that with the experience of a friend who was successfully treated with an oral drug for her cancer.

“She went through that, did not lose any hair, had a wonderful cancer treatment, and has now been cancer free,” she said. “The quality of life that she had, compared to what my younger brother had, I can’t put a dollar value on that.”

“The cost of health care is very complex, and insurance companies negotiate with hospitals for every drug, every procedure,” said Chapel Hill Democrat Verla Insko, a former hospital administrator. “And they’re all different, depending on the negotiations.”

Insko said that in states where bills similar to this one have passed, insurers have had trouble determining what the parity price would be.

“You can go to one hospital and the price is $3,486 … another hospital it would be $15,000, and if you go to an independent physician’s office it may be $50,” she said.

Insko argued that in other states, pharmacists and insurers, unable to determine the so-called parity price, have simply charged nothing.

“And the insurance companies would not absorb this cost; they’d transfer the cost to other users or reduce coverage in other ways,” she said.

But Insko said she supported the idea the bill was trying to address.

“It’s really good for the patient,” she said of the bill.

Representatives debated the bill for close to an hour Wednesday evening and came back to it Thursday afternoon for a final vote. Insko then joined with Republican Sarah Stevens (R-Mt Airy) to offer an amendment on the House floor that would cap patients’ monthly out-of-pocket expenses for oral chemotherapy at $300 per prescription.

The amendment passed overwhelmingly, allowing the bill to move forward to a final vote, where it passed, 112-5.

The bill now moves to the Senate for consideration.

Cover photo Okko Pyykkö, flickr creative commons

Borelli holds up the box for her cancer medication

Bill Would Reduce Co-Pays on Oral Cancer Drugs

April 24, 2013 by Rose Hoban

Bill Would Reduce Co-Pays on Oral Cancer Drugs - North Carolina Health News

A bill would bring down the price of co-pays on oral cancer drugs.

By Rose Hoban

When Amelia Borelli was first diagnosed with a form of leukemia in 2010, for treatment she went the traditional route of having intravenous chemotherapy.

But her first chemo treatment landed her in a coma. Borelli, 68, spent the next six months in the hospital and rehab.

“It knocked out that leukemia, but it nearly got me,” Borelli, a New Jersey transplant who now lives in Oxford, said.

Now, every day, Borelli takes an oral chemotherapy drug called Tasigna. But even with her insurance, the co-pay on the drug is about $1,500 per month.

“I don’t have it,” Borelli said. “I’ve been financially devastated since I got the leukemia.”

“Everyone,” she said, “knows what cancer costs.”

Borelli was at the General Assembly Tuesday to urge lawmakers to pass a bill that would require insurance companies to reduce co-pays on some of the expensive drugs required by cancer patients.

Borelli said that if she didn’t take the Tasigna, she’d be back in the hospital. Instead, she’s on a patient-assistance program run by the drugmaker Novartis, until October, that gives her the drug for a lot less. She said it doesn’t make sense that her insurance company won’t pay for the drug, but will pick up the tab for the hospital.

“I think I ended up paying maybe $200 out of the hospital stay,” Borelli said, “as opposed to the $1,500 a month [for the medication]. If I go back to the hospital now for therapy, my insurance will cover it.”

The bill before the legislature would make co-pays for oral drugs the same as co-pays for IV chemotherapy.

Different co-pays

Both supporters and opponents of the bill argue that one of the problems in the way insurance is organized now is that patients usually have separate deductibles for medical treatment and pharmacy costs. And when patients see a doctor to have IV chemotherapy administered, they pay the co-pay for the doctor visit, not for the drug they’re given.

But if that same patient goes to the drugstore to pick up a prescription, he might get hit with a huge co-pay for the drug. For many patients, those costs add up to a different deductible for pharmacy benefits. And for many patients, that big co-pay comes all at once. You either pay it right then, or you don’t get your medication.

Borelli said when she went to the pharmacy for the first time to get her Tasigna prescription filled, she balked at the $1,500 price tag.

“Never mind, I won’t fill it,” she recalled thinking.

Lisa Nelson, lobbyist for the Leukemia & Lymphoma Society, said that research has shown that when cancer patients are faced with a huge pharmacy co-pay, about a quarter of them will walk away, even from life-saving drugs.

“If you have a $2,000 prescription, its irrelevant what your total annual out-of-pocket is,” Nelson said. “That amount is so overwhelming to a cancer patient that they are not going to fill that prescription.”

But a spokeswoman for BlueCross BlueShield of North Carolina pointed out that once the Affordable Care Act goes into effect in January 2014, patients’ out-of-pocket expenses will be capped at a total of $6,350 per year for everything – medications, hospitalizations, doctor bills.

“And remember, new federal rules prohibit plans from turning away people because of pre-existing conditions, and in many instances people who need it the most will get financial assistance for their health insurance premiums, as well as assistance for paying for their medical care,” said Chris Evans, BCBSNC’s chief of regulatory affairs.

Evans told the House Health Committee Tuesday that passing the bill would effectively mean that her organization would be forced to give away the oral cancer drugs.

“In other states where this language has passed, Blue Plans have had to implement the benefit with zero-dollar cost sharing for the member because of the way the language is drafted in this bill,” Evans said. “In reality, though, these drugs aren’t free. Everyone will pay.”

Pricey medications

Evans also pointed out that with a bill such as this one, there’s little incentive or pressure on drug companies to lower costs.

“This bill will hide the costs of those drugs – moving away from the transparency,” Evans said. She pointed out that spending on oral cancer medications has increased dramatically in recent years, and that all of those medications are expensive.”

Borelli said that without insurance, her medication, Tasigna, would cost $4,085 per month.

Cancer patients are not the only ones who face potentially huge co-pays for medications. New generations of drugs for diseases ranging from multiple sclerosis to rheumatoid arthritis can cost hundreds per dose or thousands per month.

“We know that there are a lot of specialty drugs in the pipeline,” said BCBSNC spokesman Lew Borman. “We’ve been involved in specialty pharmacies taking a look at that and trying to implement change that way. This bill doesn’t move the issue in the direction that impacts cost or quality.”

Borman said BCBSNC predicts that such specialty drugs will account for at least 50 percent of the company’s spending on pharmaceuticals by the end of the decade.

Both Borman and Evans argued that another mandate on insurers could result in higher premiums for everyone.

That issue was something lawmakers in the health committee meeting were concerned about as well; they discussed referring the bill to the insurance committee for further review.

“Until we understand the financial implications of it, the ins and outs, we don’t need to step off a precipice,” said Rep. Marilyn Avila (R-Raleigh). “I want to know more.”

“I don’t have objections to more sets of eyes looking at a bill that affects the public policy of the state,” said Rep. David Lewis (R-Dunn), the bill’s primary sponsor. “But when it was filed and it wasn’t referred to [the insurance committee], it was because of written information received that the Department of Insurance doesn’t consider it a mandate.”

An amendment to refer the bill to the insurance committee failed by a vote of 10-8. The bill passed the committee on a voice vote and will be sent to the House floor.

Additional Thanks

Categories

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Cancer Drug Parity Bill Passes House

Cancer Drug Parity Bill Passes House - North Carolina Health News

Bill Would Reduce Co-Pays on Oral Cancer Drugs

Bill Would Reduce Co-Pays on Oral Cancer Drugs - North Carolina Health News