I was 27 years old when I got the news that I had cancer. At the time I was working on President Obama’s re-election in 2011 — a dream come true — but there I was, on the campaign trail, living with acute myeloid leukemia, the deadliest of blood cancers.
On paper, this is a disease of older men. But I was a young woman with decades ahead of me in dreams and milestones. No one really knew how to treat me — as a patient or a person — because cancer is supposed to be an older person’s disease. My doctors didn’t use the “normal” protocol for acute myeloid leukemia on me because there’s little data on young adults. Some of the nurses had trouble because I was their age and it was the first time they had seen a peer go through cancer treatment.
I learned the truth firsthand: Cancer is the leading cause of disease-related death among Americans under the age of 40.
In the U.S. alone, 70,000 teens and young adults are diagnosed with cancer each year. We make up 8 percent of all cancer diagnoses. But young Americans affected by cancer have seen little to no improvement in survival rates over the last four decades, even as deaths from cancer among older adults have declined by 25 percent since the 1990s.
We talk a lot in this country about the five-year survival rate and how more people are hitting that mark now than ever before. But survival is only one part of the journey. As many young adult cancer patients and survivors will tell you, cancer is a burden you carry your entire life.
At every doctor’s appointment, you check the “cancer” box and then retell the whole terrible story of how it was found, how it was treated, and what’s happened since then.
You become an expert at reviewing health insurance plans because the insurance offered can determine whether you take an exciting new job or stay put.
You hold your breath and hope that the birth mother or adoption agency doesn’t throw out your application to adopt a child because you don’t have a “normal” life expectancy.
You hope and pray that the cough that won’t go away, the bruise that appeared out of nowhere, those migraines you can’t shake isn’t your old cancer coming back or a new one beginning, possibly caused by your treatment.
I was recently in a meeting in Washington, D.C., with the American Cancer Society and a number of cervical cancer patient advocacy groups. They shared some exciting news: They truly believe that in our lifetime cervical cancer will be the first cancer with a mortality rate of zero.
You could feel the hope in the room: Cervical cancer is becoming a preventable, treatable, and curable disease. It’s everything that Dr. Sidney Farber, the father of chemotherapy, and philanthropist Mary Lasker, the spirit behind the American Cancer Society, envisioned when they asked President Nixon to fight the war on cancer.
Cervical cancer is the second leading cause of cancer-related death for women between the ages of 20 and 39. This year, nearly 13,000 women will be told they have it and more than 4,000 will die from it. In 90 percent of cases, the disease is caused by the human papillomavirus — an infection that spreads through intimate contact.
This virus, which infects nearly 80 million Americans, causes other cancers, too. It’s the source of 70 percent of cancers in the throat, neck, and tongue, and is a leading cause of cancers of the vagina, vulva, penis, and anus. According to the Centers for Disease Control and Prevention, nearly 40,000 HPV-associated cancers occur in the United States each year, more than 23,000 among women and nearly 17,000 among men.
These cancers can largely be prevented, thanks to an effective vaccine against HPV.
Government agencies and insurance companies alike believe in the safety and effectiveness of the HPV vaccine. The Advisory Committee on Immunization Practices, a group of medical and public health experts that develops vaccination guidelines for Americans, recommends that all 11- or 12-year-olds girls and boys get a shot of the HPV vaccine with a follow-up shot six to 12 months later. The CDC’s Vaccines for Children program makes the vaccine available at no cost for children on Medicaid and Native American children. The Affordable Care Act requires private insurance plans and state exchanges to cover the HPV vaccine at no cost to patients.
It’s good health policy and it’s good economic policy. Each dose of the HPV vaccine costs the payer (not patient) $130 to $150. Compare that to the five-year adjusted cost of $70,000 for treating cervical cancer, or $80,000 for the first year of treating oral cancers.
Young cancer survivors like me, as well as public health officials, have a duty to make sure that every parent has the facts about the vaccine in order to have conversations with physicians about what is right for their child and family. There is no parental choice without a conversation between parent and provider.
In 2015, Rhode Island added the HPV vaccine to the list of immunizations children need before they can attend school. Today, nearly 70 percent of children in that state are protected against this cancer-causing virus. Virginia and the District of Columbia have followed Rhode Island’s lead.
Florida, my home state, is now considering doing the same thing. Last month I stood with my friend, state Sen. Jose Javier Rodriguez, state Rep. Amy Mercado, and Dr. Damon Reed, director of the Moffitt Cancer Center’s Adolescent and Young Adult Oncology Program, in support of the Women’s Cancer Prevention Act. In Florida, fewer than half of girls and only one-third of boys are up to date on their HPV vaccinations. That’s below the national average.
Adding the HPV vaccine to the list of immunizations needed for school entry would ensure that parents have all the options laid out and, more important, have an opportunity to sit with a doctor to discuss the best care for their children.
I’ll never forget the look in my mother’s eyes as she watched her only daughter battle a life-threatening disease. She would have done anything to have been able to prevent me from developing cancer.
If I am blessed one day and become a parent, I would do whatever I could to help my child avoid even one type of cancer.
Everyone can help prevent HPV-related cancers. It’s as simple as asking your state legislature to include the HPV vaccine on the list of immunizations needed for school entry. Let’s end these eminently preventable cancers.
Kate Yglesias Houghton is the psident and CEO of Critical Mass: The Young Adult Cancer Alliance.