FIRST OF THREE PARTS
Mari Galiher was diagnosed with leukemia at 4 years old and went through 2 1/2 years of chemotherapy that made her thick, light-brown hair fall out each morning.
“She would look at her pillow and it was covered with her hair,” said her mother, Diane Ono. “I always said, ‘It’s OK, Mari, your hair will grow back.’ Her hair would start to grow back, then she’d have to have another dose and it would make her hair fall out again. You could tell she was just very sad.”
Galiher also endured painful spinal taps and chemotherapy injections directly into her central nervous system that often caused severe headaches and nausea, but prevented the disease from spreading to her brain. Her targeted treatments were part of a large national study through the University of Hawaii Cancer Center, which has about 150 ongoing clinical trials that offer the latest therapies to qualifying cancer patients.
“The way I see it is without clinical trials — these studies that are going on that patients like Mari are able to participate in — cancer is very hard to cure,” said Ono of her now 23-year-old daughter, who will graduate from UH in May with a master’s degree in communications. “The fact that she was the beneficiary of years of research that resulted in this clinical trial to me is everything. It saved her life.”
The UH Cancer Center has made significant strides in its fight against one of the world’s most deadly diseases, targeting research and clinical trials specifically to Hawaii’s diverse population. But the center is struggling to secure long-term funding from the state Legislature to help offset this year’s $7 million operating deficit and future shortfalls. Adding to its fiscal woes, UH opened a $130 million facility in Kakaako in 2013 and issued bonds to pay for the building, saddling the center with a nearly $8 million annual mortgage payment.
The center’s financial troubles stem in large part from an outdated business plan that assumed the university’s share of the state’s cigarette tax would remain constant at around $20 million a year. But as fewer people smoke, tax revenues have fallen to about $14 million annually. Turmoil surrounding the center’s previous leadership and the negative publicity that ensued also significantly affected philanthropy and recruitment of top scientists.
Former Cancer Center director Michele Carbone, who resigned in 2014 amid complaints about his management and growing fiscal concerns, said the organization raised $25 million during his tenure from 2009 to 2013. That dropped to less than $2 million in 2014.
“People didn’t want to donate to us anymore because of the negative (publicity),” said Carbone, who remains a top researcher at the center. “After that I wasn’t able to hire anybody. That went down, the cigarette tax went down, UH got a new president and chancellor, and the priorities of the university changed. Clearly it’s not a priority.”
As a result, UH officials are petitioning for $5 million in continuing state support to help it recover from its crippling deficit that has polarized lawmakers, faculty and current and former supporters. To stay afloat, the center has been using money from its cigarette tax reserve fund, which is expected to have about $24 million at the end of the 2016 fiscal year and be depleted in a few years.
If the organization doesn’t get the financial support it needs, it risks losing its federal research designation — and the millions of dollars that come with it — and likely could not survive, said Jerris Hedges, the Cancer Center’s interim director and dean of the UH John A. Burns School of Medicine.
“We would cripple the fight against cancer in the islands and hinder the health of our diverse population through loss of research, education and cutting-edge patient care trials,” he said. “More than 6,000 patients every year would face decreased treatment options in Hawaii, and that loss would especially restrict access to new therapies and treatments for minority and underserved populations. Quality of patient care in Hawaii would significantly suffer.”
Without access to those clinical trials locally, more patients from Hawaii would need to leave the islands for cancer treatment.
“When families leave their homes for medical care they incur costs not covered by insurance, and they are away from their local support networks of family and friends — factors known to improve response and recovery,” he said. “Millions of federal grant dollars supporting our local economy would be lost.”
As one of 69 National Cancer Institute facilities, UH has an edge when competing for federal funds and recruiting high-caliber scientists into its research program. As much as 80 percent of the NCI’s $5.2 billion annual research budget goes to its designated cancer centers. UH researchers generate more than $20 million a year in federal grants.
“If we didn’t have the NCI designation we would lose access to grants, we would lose access to good researchers, we would lose the ability to really live up to our potential, which is to make a difference in the lives of Hawaii’s people that are going to get cancer,” said Sen. Roz Baker (D, West Maui-South Maui). “It is an asset to Hawaii. If we lose it we will never get it back.”
Carbone agreed, saying, “Everybody will leave if the center loses its designation because the NCI designation is critical for us to do the work we are doing.”
But state Rep. Isaac Choy (D, Manoa-Punahou-Moiliili), a critic of the center, said the organization’s bid for financial aid is “a tough sell,” especially with all the other state priorities.
“The state has finite money and if you’re asking for state money, you’re actually competing with every other need in the state. It seems that they don’t understand the gravity of their request compared with all the other needs in the state,” he said. “This is not a one-time shot. This is a permanent financing. Right this very second it looks like they’re going to lose (the NCI designation).”
The center is nearing a critical deadline to select a new director and maintain its federal research designation. UH has until October to find a new Cancer Center leader, who would then have one year to demonstrate that the organization is on solid financial footing and has enough researchers bringing in grants and doing clinical trials potentially leading to breakthroughs for Hawaii’s growing population of cancer patients.
UH first obtained the prestigious NCI designation in 1996, received its latest five-year award in 2012 and was granted a one-year extension to complete recruitment of a new director.
Despite the numerous plans to lift the center out of its financial hole, none have gained consensus from university and state officials, some of whom feel UH over-promised and under-delivered on the vision of a biomedical campus, which along with the John A. Burns School of Medicine, was supposed to be the catalyst for a vibrant new industry that would diversify the economy.
“There are people who want to close the Cancer Center down, people who want to greatly expand it, people who want to keep the Cancer Center but maybe on a slightly smaller scale. There are people who think we don’t need a designation and people who think it’s absolutely critical we keep the designation,” said UH regent Jeff Portnoy. “There’s been a lot of controversy, internal dissension, a lot of politics — none of that has been helpful. That’s all going to have to be overcome.”
STARTUP AND SPINOFF COMPANY
CLINICAL TRIAL PATIENTS AND GUEST SPENDING