Maddie Major shouldn’t be alive today. The eight-year-old girl has been fighting a form of leukemia since she was three. Robyn Major, Maddie’s mother, says in spite of chemotherapy, radiation, and even a bone marrow transplant, Maddie’s cancer kept coming back.
“In August of 2012, she relapsed for the second time,” says Robyn Major. "It was at that time that we realized conventional therapies weren’t going to offer a cure for Maddie.”
Maddie’s parents enrolled her in a clinical trial for a brand new treatment. It uses her body’s own immune system to attack the cancer. And it’s working.
There is no longer any trace of cancer in Maddie’s system. In addition, new treatment doesn't have debilitating side effects, like those that come with radiation and chemotherapy.
New weapons available to treat cancer
Dr. Drew Pardoll, from Johns Hopkins University, is one of the pioneers of this new approach to cancer treatment. He says it’s all come about in the last five years.
“Science has now created an armamentarium, the likes of which have never been seen in the history of cancer therapy,” says Dr. Pardoll.
New armaments like immunotherapy are the result of decades of investments in scientific research. Despite progress, in Kansas alone more than 14,000 people will be diagnosed with cancer this year, and nearly 5,500 will die.
While new weapons are available, the need for more of them is growing because cancer is most common in older people, and the population is aging. Yet, research funding is not keeping pace with inflation, and researchers worry sequestration could hinder or even halt some of that research.
Funding woes
The budget for the National Institutes of Health has been relatively flat for the past 10 years. In fact, political gridlock over the budget led to spending cuts last March, known as sequestration.
Dr. Roy Jensen, who directs the University of Kansas Cancer Center, says now is not the time to disinvest in biomedical research.
“If it continues to go on, it’s frankly going to be, I think, nothing less than disastrous,” says Jensen. “In particular, some of the proposals coming out of the House of Representatives right now, where they have spending targets that are dramatically lower than where we are, even with sequestration.”
Under sequestration, Kansas stands to lose $5 million in biomedical research funding.
The effects on future research
The struggle for research grants is already being felt at the Johnson Cancer Research Center, at Kansas State University. Director Rob Denell, a cancer survivor, says the funding squeeze is leading to fewer students applying to graduate school, and those who do are finding it difficult to get a tenure-track position.
“We have had several of our very best scientists, who have been funded for decades from the NIH, who have not received funding within the last year,” says Denell. “It’s been very disheartening.”
Denell says this comes at a time when K-State researchers are developing new ways to diagnose deadly cancers, like lung and pancreatic cancers, much earlier when treatment is more likely to be effective. He thinks clinical trials could begin in one to two years but only if funding is available.
The financial pressures are industry-wide, according to a new survey by the American Society of Clinical Oncology. The society’s Chief Medical Officer Richard Schilsky says 75 percent of cancer researchers surveyed say the struggle for federal funding is having a direct impact on their work. In many cases, it’s halting or slowing research that could lead to new therapies.
“But the scariest prospect is that the best and the brightest are coming out of college and saying, you know, there’s no future in research, because it’s impossible to get funded, and if you can’t get funded, you can’t do your work, and you don’t have a job,” says Dr. Schilsky. “I think that’s where the long-term consequences are really going to show up.”
Attempting to lobby Congress
Dr. Schilsky wishes people would get angry about this situation—the way they did about sequester-related air travel delays—and demand that Congress take action.
More than 170 organizations have been lobbying for medical research funding. Reagan Cussimanio was among the group that met with the Kansas congressional delegation.
“We were actually very encouraged by their response,” saysCussimanio, a spokeswoman for the American Cancer Society in Kansas. “ Congressman Yoder actually, we were not aware at the time, but now are, that in March of 2013, he actually provided a letter to the Appropriations Committee, indicating that he would like for them to continue funding NIH at pre-sequestration levels.”
Others are a harder sell. Cussimanio says Congressman Tim Huelskamp was non-committal. Huelskamp has been one of the most vocal supporters of sequestration in the House. Advocates for medical research argue that it’s short-sighted to shortchange cancer research.
Five years ago, the NIH estimates cancer’s economic toll at more than $200 billion a year.