The rallying cry of “More Progress! More Hope! More Life!” may have been the most concise way to sum up the scope of what brought an estimated 8,000 people to downtown Washington,DC, this morning, as the breadth of the tragedies, ordeals and triumphs they represented was world wide, and as long as memory.
Speakers, as well as the thousands who crowded the streets around the Carnegie Library, included people who have fought and survived cancers, chronic diseases, and infectious illnesses, and they represented more people who have won and lost battles against sicknesses, because science found the answers, or didn’t, in time. They represented the hope science has given people with HIV, diabetes, heart disease, Alzheimers disease, cancers once considered incurable, cancers still considered incurable. They represented scientists who have devoted careers to finding answers that could remain out of reach.
With the largest source of funding for medical research in the world facing sequester and “budget cutting fever” funding reductions, what they had in common was universal, a reliance on medical research to save and improve lives.
“This is probably the most important thing going on in Washington, not only today, but all year,” said broadcast news analyst Cokie Roberts, who emceed the event. She was treated for cancer at the National Institutes of Health and for years has served on the board of the NIH’s Children’s Inn, a treatment and research center for children with illnesses not responding to current treatments.
“It could not be a stupider time to cut back on funding for needed research,” she continued. “We are right on the cusp of so many breakthroughs.”
Rep. Rosa DeLauro (D-Conn), a survivor of ovarian cancer, drew attention to the financial wisdom of robust research funding — creating jobs and products, it provides “two-fold returns on our federal investment,” she said, adding, she had supplied this information in case, “we cannot get the naysayers on the humanity of medical research.”
It was a series of medical research breakthroughs now more than two decades old that saved life of HIV treatment advocate and journalist Regan Hoffman, who was first among speakers who told their own stories. She was in her mid-20s, “in the prime of her life,” she said, when she noticed a lump where her swim suit met her leg. It was a swollen lymph node, and that is how she learned she had the virus that leads to AIDS, she recounted. Her doctor told her she had about two years to live.
“He thought, incorrectly, that I was near the end of my days,” she said. The year was 1996, the same year that antiretroviral therapies offered the first lasting hope for people living with HIV, turning the virus into a chronic manageable disease for those who could access the drugs. That advance isn’t enough, though, she said. The pills have side effects, must be taken regularly and, for now, unendingly. And if she didn’t have health insurance, she added, she would join the millions of people who struggle to access them at all. While worldwide an estimated 8 million people have access to life-saving HIV treatment, at least 26 million do not.
“Hundreds of thousands of them,” she said, “live in the U.S.”
Gratitude that her life has been spared by the pills she takes is part of what keeps her going, said Hofman, who is on the board of amfAR, the foundation for AIDS Research. Hope for the day she no longer has to take the pills, she added, is the other part.
Other speakers included NIH director Francis Collins and former Congressman and Research!America chair John Porter
Supporters of the rally included the Infectious Diseases Society of America and the HIV Medicine Association.