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.
“In 90 percent of cases, the disease is caused by the human papillomavirus”. In 10% of cases, it is not. I am not a medical professional, I do not seek out those who have been diagnosed with cancer, I’m just a random ‘man on the street’. Yet I know three women, two of whom are in their teens, who have been diagnosed with non-HPV cervical carcinoma. Being vaccinated is no guarantee. Even if an HPV vaccine has been administered, it is critical to seek appropriate medical attention at the first sign of symptoms of this insidious disease.
So far what we have learned is that if someone is vaccinated obviously before contracting HPV they are also immune from the specified 6 types of cancer as well
The body can react to the HPV more aggressively and will prevent the disease from starting if vaccinated
The 10% issue might be related to our lack of understanding of the disease. I expect that over time we are going to find that viruses are a KEY element in cancer the virus somehow alters the body’s immune response to allow it to ignore these altered cells rather than fight them off. EVERYONE has cancers cell in their body 24/7 the difference between a cancer victim and a healthy person is the victim’s immune response doesn’t see the cancer cells as cancer
So far what we do know is that YES there are certain patients with HPV cancers but that might be an aberration of data. It is hypothesized that there is a deeper link that is virus instigated but no virus titer is left bobbing around to measure
The 3 women you know were MOST likely infected somehow subclinically. The fact you know 2 who are teens is amazingly rare I have to question that since cervical is pretty much a disease of women post-puberty not in active puberty
This reads like an advertisement for the HPV vaccine, so I decided to follow the money. It didn’t take long. About five minutes or so. Why should it be up to the reader to find out that Eli Lilly, the for-profit drug company that makes and profits from vaccines and has lobbied for mandatory HPV vaccinations of school age children, also funds Kate Yglesias Houghton and her Critical Mass organization? Where is the disclaimer? What a terrific example of why trust in media has fallen on such hard times.
The HPV vaccine used in U.S. Is made by Merck. So your theory is that because the author has some obscure connection with Ely Lily she is speaking up to promote a competitor? That’s not actually following the money. That’s trying to dismiss the article with an extremely weak version of the shill gambit.
It doesn’t counter any of its points, either.
This is a cancer survivor speaking to protect others from cancer. More power to her.
PATHETIC knee-jerk response to an otherwise very valid article!
Paranoia is so rampant in the society that one is accused of conflicts of interest, secret backdoor deals, and subversive pronouncements without even having the facts evaluated for durability.
This has grown so bad that no one is safe to open their mouth without some Google happy searcher trying to discredit them for no reason at all.
If the FACTUAL DETAILS were indeed incorrect then, by all means, look for some sort of reason why they would ignore them in favor of their own spin but in this situation, the entire article as written is totally on point.
If this cancer survivor had in fact been associated with an organization that was “supported” by a group that was affiliated with another organization that was accepting donations from a for-profit company that was remotely associated with the actual manufacturer of Guardisil then OK maybe some critique but in this case that is all BS. You created a fictional money exchange to support your bashing.
The current vaccine is sold by and created thru MSD so what
You neglected to mention that I supported her article 100% and have NO affiliation with MSD EL or similar.
It is MOST unfair to bash a writer for writing unless you have actual proof that there were coercion and bias. Show me her 1099 and I will be open to your paranoid approach until then instead of researching her affiliations research the actual facts that were addressed
Took the words right outta my mouth. How about informed consent re safety in addition to the $ Train? Gardisil already has left a wake of permanently damaged victims who CANNOT sue ad a result of vaccine mfgrs immunity.
I am glad you came through the cancer, and thank you for speaking up for protecting others from going through similar suffering and potential death.
I really hope people listen, and we can reduce, maybe eliminate HPV cancers.
Well done and THANK YOU for your advocacy
As one of the surgeons who has spent an entire career treating nothing but head and neck cancer your efforts are not in vain
The issue is FAR greater then most have been led to belive and if the education would be increased and the rhetoric and nonsense eliminated we could, in fact, reduce these 10 cancers in our lifetime
I suspect we will find other cancers have similar viral affects as well but we are only in our infancy of discovery
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