Emerson Fischer wanted to help her grandfather pay for cancer treatment.
“Mama, how much does Papa Ken’s medicine cost?” the 6-year-old girl asked her mother.
“It costs lots of money, Baby,” her mother said.
“Well, if I save my allowance for two months, I will give it to him, and then he will have enough money to get better.”
By the end of the two months, Emerson’s hot pink piggy bank will have about $40.
If Emerson’s grandfather, Ken Jolley, had it his way, neither Emerson nor the rest of his family would be helping him pay for his cancer treatment. Instead, the VA medical system would.
Vietnam veteran Ken Jolley’s family has focused on fundraising for Jolley’s treatment after the Oklahoma City VA Medical Center denied paying for a non-VA clinical trial that Jolley argues is his only shot left at survival.
“The prognosis is — without treatment at this point, they're saying 24 months or less,” Jolley, of Allen, said. “ ... With treatment, I stand a very good chance.”
For the past several months, Jolley, 64, has debated with leaders at the OKC VA Medical Center about whether the VA should pay for Jolley to participate in a non-VA clinical trial.
The VA has offered him other forms of treatment, but none have been shown to be effective in stopping the rare form of cancer he has, Jolley said.
Dr. Mark Huycke, the chief of staff at the hospital, said in a statement that OKC VA is committed to providing the highest quality care to veterans.
“Patients are screened for clinical trials, and those who meet eligibility criteria have the option to participate in a clinical trial,” Huycke said.
“Veteran Health Administration follows nationally accepted clinical guidelines to ensure standards-of-care treatment is delivered and always considers federal regulations when providing care. Local decisions on requests for non-VA care can be appealed through the facility and, if needed, to network headquarters for further consideration.”
In 2013, six patients at the OKC VA Medical Center were enrolled in non-VA clinical trials. Meanwhile, there were 138 active clinical trials open in 2013 at the OKC VA medical system, and 1,237 Veterans were enrolled in those trials.
Nationally, the VA medical system has faced fierce scrutiny, with attention over the past few months focused on the delays that veterans face when seeking care.
Jolley has seen those delays in his cancer treatment.
In August 2010, Jolley noticed a small mole on his back that had grown darker in color. He soon had a biopsy performed, which tested positive for skin cancer. Tests a few months later showed Jolley had lesions on his liver, lung and inside his chest.
Over the next year, Jolley would wait months at a time for testing and screening. Nine months after Jolley had his first appointment, a doctor at a Texas VA hospital would tell Jolley he was in stage four of his cancer diagnosis.
“You may not want to do anything at this stage,” the doctor said. “Just go home and get your affairs in order.”
Shortly thereafter, Jolley would learn he had neuroendocrine carcinoid cancer, a rare form of slow-growing tumors mostly found in the gastrointestinal system, although they can grow in other parts of the body, according to the Carcinoid Cancer Foundation.
In May 2012, Jolley moved his treatment from Texas to the Oklahoma City VA Medical Center. Doctors there told him that, with carcinoid cancer, a “wait and watch” approach is an acceptable form of treatment.
Jolley disagreed and sought a second opinion at Vanderbilt University Medical Center in Nashville where a doctor recommended he receive peptide receptor radionuclide therapy in Europe, a therapy that isn’t approved in the U.S.
It’s a similar advice that Dr. Thor Halfdanarson recommends to his patients, although it comes at a cost.
Halfdanarson, a gastrointestinal oncologist at the Mayo Clinic, said he sends his patients to Germany, Switzerland and the Netherlands. It’s an effective therapy, but it’s expensive, ranging in cost from $40,000 to $60,000.
“This is almost never covered by insurance — that is a recurrent problem every week in my clinic,” he said. “And most of my patients can’t afford to go abroad for treatment.”
Halfdanarson said peptide receptor radionuclide therapy works essentially by taking radiation directly to the cancer cells.
With neuroendocrine cancer, radiation typically given to cancer patients is impractical, for the tumors are widespread, and a doctor would have to radiate a large portion of the patient’s body, he said. Additionally, chemotherapy hasn’t been found to be effective either, he said.
However, peptide receptor radionuclide therapy has been found to be effective in treating the type of cancer Jolley has. Unless patients in the U.S. can get accepted into a clinical trial, Europe is one of their only options, Halfdanarson said.
Jolley took the Vanderbilt doctor’s advice and went to Germany.
When he returned to Germany in 2013 for his third course of radionuclide therapy, the tests and scans showed no new tumor progression. Also, existing tumors had shrunk by more than 42 percent.
At this point, Jolley had exhausted his retirement savings, spending thousands of dollars to go to Germany and pay for the treatments. In total, he has paid more than $50,000 for his care.
For the past year, Jolley has tried to persuade the OKC VA to pay for the radionuclide therapy through a clinical trial in Houston, which has been approved by the U.S. Food and Drug Administration.
This month, Jolley was accepted into that trial and received his first treatment, which cost about $11,000 for each treatment, Jolley said. The cost of the entire clinical trial will be about $45,000, less money than six months on the palliative treatment that the VA has offered to provide, Jolley said.
So far, Jolley has paid for the trial with borrowed money, family help and donations.
“I managed to pay for the first one,” he said. “I have no idea how I'm going to pay for the second, but the Lord will provide a way.”
Jolley must pay for the drugs he receives because the trial isn’t sponsored by a drug manufacturer or university, said Susan Cork, therapy patient coordinator at Excel Diagnostics and Nuclear Oncology Center.
Cork said a veteran from Minnesota is enrolled in a similar trial at the center, and the VA health system in his state has agreed to pay, Cork said. A North Carolina veteran plans to start treatment in the same trial that Jolley is in, and Cork said they’re waiting to see if that VA will pay.
Meanwhile, no one at the OKC VA has returned Cork’s calls to clarify why they won’t pay for Jolley’s treatment, she said.
“They're not even trying to help their veteran at this point,” Cork said.
Beyond the VA, Jolley has private health insurance through Blue Cross Blue Shield of Oklahoma, which has also denied coverage for the clinical trial because it is experimental. However, the insurance company will pay for a portion of the tests that Jolley needs for the trial once he meets his deductible.
In the meantime, Jolley’s family is fundraising. Beyond their piggy banks, they’ve planned online fundraisers, a community dinner in Ada in July, a raffle in Norman in July and a few other fundraisers around Ada.
Meanwhile, Jolley’s cancer has spread to his bones. After receiving his first treatment in Houston, he said he feels better than he has in a while. Jolley plans to finish treatment, with or without the VA’s help.
“I am not a quitter — I battle,” Jolley said. “And I will give up when they put me six feet under.”