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Speaking with Lillian Kreppel – co-founder of the HPV Cancers Alliance

Country United States of America
Date Posted July 2022

Cancer Thriver with a mission to raise awareness about HPV

Receiving a cancer diagnosis is always a life changing event, but when New Yorker Lillian Kreppel was diagnosed with anal cancer in 2017, raising awareness of the virus that caused her cancer became her life’s mission. After she kicked that cancer out of her body, she didn’t go back to her successful career in sales. Instead, she made a radical shift and started a non-profit to raise awareness about HPV and the cancers it can cause. Not many people go from cancer patient to hard-core patient advocate. Let’s pick up her story from there.  

Q: Lillian, what made you start HPV Cancers Alliance a few years ago?

LK: To answer that question, I have to explain what nearly went very wrong for me. 

About five years ago, I noticed something was wrong with my bowel movements. Each day I observed a small amount of blood in my feces. Initially I didn’t panic, I thought maybe it was a hemorrhoid. After a few months the symptoms worsened, including itchiness and pain. I went to the gynecologist to find out what was going on and to treat the problem. I received a rectal examination after which I was told that I was fine.

But I didn’t feel fine. My body was telling me that there was a problem. So I consulted another doctor that I knew and trusted, a gastro-intestinal specialist. He performed an anoscopy (a procedure to view the lining of your anus and rectum). He then told me that the next day we would do a sigmoidoscopy (examination of the lower part of the colon), basically looking further. After that examination, he informed me that I had a cancerous tumor in the anus. I was completely shocked. But then he said, “It’s treatable.” I focused all of my energy on those last two words, and we went to work getting that cancer out of my body.

Q: Did you know at that point that HPV could cause other cancers aside from cervical cancer?

LK: No. I only knew about the link between HPV and cervical cancer. And sadly, that’s typical. Central to our work at HPV Cancers Alliance is getting the whole story out there that there are five other cancers that HPV causes.

Q: How did you feel when you learned that HPV could cause anal cancer?  

LK: To be honest, I felt angry. My gynecologist rarely mentioned HPV. During my regular screening appointments, I would receive a colposcopy (a test to take a closer look at the cervix) and that would be it. I wish I had been better informed about all of the risks HPV posed to my health. But it seemed that the other types of HPV cancer were not on her radar screen. If a person has HPV, that they should be made aware of it.

Q: What did the second doctor do differently in his examination to find the tumor?

He used a technique called palpating, which is tapping with the fingertips. He felt something hard that was not supposed to be there. That was the tumor that many doctors mistake for a hemorrhoid.

Q: So by listening to your instincts and pursuing a second more rigorous examination, you got an accurate diagnosis, followed by treatment that saved your life. And for the last three years, you’ve transformed anger into energy to elevate awareness about HPV within the medical community and the general public.

LK: Correct. I thought to myself, if this can happen to me, a healthy woman with good genes, it can happen to anyone. I speak up for myself, but not everyone is a fighter like I am. I don’t want that experience to happen to anyone else. People want to trust their doctor’s expertise and approach to protecting their health. But doctors are also human and have their blind spots.
The point is, HPV can cause six types of cancer: in the vulva, vagina, penis, anus, and oropharynx (back of mouth and throat) and cervical cancer, which is the biggest one. While cervical cancer cases are going down due to vaccination and screening, unfortunately the other cancers are on the rise. All of these cancers are important because this virus is so common.

Q: The term patient advocacy implies ensuring that healthcare providers know and rigorously apply best practices in screening and treating patients. Where does raising awareness about HPV fit in? 

LK: Awareness is crucial. We need to make it normal to talk about HPV. It is a pervasive virus affecting most people. Nobody should be dying from a preventable cancer. In my opinion, many healthcare providers don’t talk enough about HPV to their patients. Why is it that most women don’t realize that an HPV test (called Co-test) occurs during a regular cervical screening? Mentioning that would be a start toward raising awareness. The tendency to not talk about HPV to patients during examinations in order to ‘spare them the details’ or prevent them from worrying just keeps them ignorant. Knowledge empowers patients to take action to protect their health, and to stand up for themselves if necessary. 

Q: As a layperson, it must be very challenging to approach the medical community with this type of ‘Hey, you guys have to do something differently here’ message.

LK: Yes, it is. However, I speak from personal experience and that’s difficult to ignore. What happened to me exposes a structural inadequacy in preventive healthcare. I went back to the gynecologist that mis-diagnosed me and told her that I had anal cancer, she seemed unaffected by this information about me, her patient. I asked her why she didn’t palpate to screen me more carefully. She said it was ‘not her area’. That’s silo-thinking. Whose area is it then?

In the US, HPV Cancers Alliance is gradually getting relevant and influential professional groups to listen to us. I’m hopeful that among gynecologists both screening techniques and attitudes can be improved. I’d like to see a poster about HPV in every sexual health clinic and gynecologists’ office across the country.

Q: If you look back over the last two years HPV Cancers Alliance exists, what makes you proud?

LK: It’s an amazing feeling to be doing something for the greater good. I know this is a job that needs doing and that HPV Cancers Alliance is helping prevent HPV cancers and saving lives. I’m proud of the great people on our board and all of the volunteers who are all passionate about our purpose. It takes a village!
Q: Do you worry about anything?
LK: Sometimes I get frustrated with red tape and the speed at which things actually change. Large professional medical organizations tend to move slowly and cautiously when it comes to changing the way things are done. I wish things could go more quickly to avert negative outcomes for people. In terms of worrying, of course we have to keep a steady eye on funding, since our organization is young and needs continued support through grants and donations.

Q: Has it benefited HPV Cancers Alliance to partner with IPVS and the International HPV Awareness Day Campaign?

LK: Absolutely. We’ve been very happy to partner with IPVS, particularly because we are in collaboration and not competition about who can do the best job raising awareness. We are in it together. We really liked the One Less Worry Campaign 2022 materials and videos for not only the messaging but the beautiful user-friendly graphics and were proud to be able to use them to spread the word about HPV. We look forward to more in 2023. 

Lillian, thank you for using your voice to tell this important story.

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