“They always say time changes things, but you actually have to change them yourself.”
― Andy Warhol, The Philosophy of Andy Warhol

Photo by Andrew Hetherington
Photo by Andrew Hetherington

Danah Abarr needed answers about HPV. She figured others did, too. So she started an organization and a movement.

It’s a familiar story: when Danah Abarr first searched for answers to her questions about HPV she was left frightened, puzzled, and poorly informed. Where to turn for help? Not wanting others to go through the same thing she founded HPV Hope, a non-profit that debunks myths and busts stigma through education while also building relationships between healthcare professionals, educators, advocates, and patients. Based in Seattle, HPV Hope offers support groups and extends its reach beyond the Emerald City with free online forums.

What led you to found HPV Hope?
When I went through my own HPV diagnosis, I was scared and felt alone. I turned to the internet to learn about HPV, but that only made me more scared and confused. There was so much conflicting and misleading information out there. I searched for in-person support groups but couldn’t find any for HPV. I was shocked; if this really is something that 8 in 10 sexually active people have in their lifetime then why wasn’t everyone talking about it; why did I feel so alone? That’s the reason I started HPV Hope (www.hpvhope.com). I wanted to be a part of a positive dialogue about HPV, to be able to talk about it openly and help to end the negative stigma that surrounds it.

I want to ask about the work you’re engaged in through HPV Hope, starting with the support groups. You have actual meetings in addition to online support, right?
Yes, HPV Hope offers online support groups. These are not chat or message boards but live online meetings where participants from all over the Country can come together and share their stories. We also offer online resources and one-on-one phone calls for anyone who isn’t quite ready to join the group.

What do you find support group attendees are asking about—for example, medical issues, relationship/personal concerns? Where do they most need the support you offer?
People come to the support groups with lots of questions. Most of them seem quite simple like; how long will I have HPV? What can I do to make it go away? How and when did I get this? The problem with HPV, and the reason we have so much confusion about it is that the answer to most of these questions is ‘we don’t know’. That’s why talking about it helps so much, because it helps us to understand that the real issue here is not the who or when of HPV, but the what to do now. In most cases, participants are scared and feel alone.

Often times the only other person they’ve spoken to is their doctor and they are worried what their friends or family members would think if they told them. And this is completely normal, so we talk about that – about how common HPV is and about how they’re not alone. We share our stories and through this sharing people begin to feel better – they see that others are going through the same things they are and that there is no reason for them to feel abnormal or alone.

We also talk about relationship issues like how do I tell my partner or future partners and what does this mean for them? Because HPV is a sexually transmitted infection, it can be a very sensitive topic, so HPV Hope wants to give people the knowledge, support and resources to be able to deal with it in a positive way and to be able to have these difficult conversations in a healthy way.

What other activities does HPV Hope sponsor?
HPV Hope was just recently granted 501(c)3 nonprofit status and with that we look to begin partnering with clinicians to do more outreach to patients who are diagnosed with HPV. We are also interested in educating medical providers about what an HPV diagnosis means to patients and the role they play in helping a patient to better deal with it. HPV Hope is also active within the community, participating in fundraisers, educational events and supporting other like-minded organizations.

I notice the education section of your website has HPV research articles focusing on both males and females. Males are often overlooked in HPV discussions and it’s good to be reminded it’s the HUMAN Papillomavirus we’re talking about, not the Female Papillomavirus! What do you think might be done to engage men more in HPV discussions?
I’m so glad you asked this question! HPV Hope has always been of the mindset that in order to deal with HPV we need to engage both men and women in the conversation. HPV Hope receives just as many inquiries from men as it does from women. This may seem surprising but I think it makes sense. Most women are used to talking with their OBGYN about sexual topics and often have support among their female friends when it comes to issues of a sensitive nature. But men do not have these same resources, and they’re just as scared and confused as women are. An HPV diagnosis brings up similar issues in both men and women: fear of sexual rejection, feelings of isolation and depression, guilt, shame, fear about their health and ability to have children. All of these topics are alleviated when we share our stories and learn that we aren’t alone. When I first started hosting support groups I considered having separate groups for men and women. I ended up not doing that simply because I didn’t have enough participants to split them up.

Looking back I’m so glad it happened that way because by dividing HPV into men vs women we miss the bigger picture – that we’re all dealing with the same fears. Blame is also a big topic when talking about HPV and if you have a conversation with just women or just men its easy to point the finger at the opposite sex. In HPV Hope’s support groups we have both men and women talking about their experiences and it helps for each gender to see it from the other’s perspective and see that they are struggling too.

If we are ever going to defeat HPV we need to focus on bringing men into the conversation. We need to shine a light on the impacts HPV has on men and we need to have more open dialogue about HPV, as you said, as a human issue not a women’s issue.

Say you’re speaking with someone newly diagnosed with HPV or a related condition. What are the three things you most want to communicate?
1. You’re not alone. HPV is the most common STI in the US. Most people don’t even know they have it and 8 in 10 sexually active people will have some form of HPV in their lifetime.
2. In most cases HPV comes and goes from your system with no lasting medical impacts, even the high risk strains. 90% of cases will clear up within 2 years (according to the CDC). What’s important to focus on are regular checkups for any high risk or precancerous symptoms.
3. The only way you could’ve avoided HPV is by never having any intimate contact with another human being. HPV is a reality of our sexual lives. Getting one of the over 150 strains of HPV is not the issue; getting a high risk strain that starts causing abnormal cell growth is and that’s when we need to have cautious concern.

What are the big challenges around HPV education?
As the HPV test & vaccines becomes more common we are, medically speaking, better equipped than ever to prevent, detect and diagnose precancerous symptoms due to HPV. However, what we aren’t at all prepared for, are the mental and emotional impacts these new HPV diagnoses will have on patients. HPV has always been a part of our lives, we just didn’t know it, and now that we’re testing for it we’re going to get a lot of HPV positive test results. So the question is, how can we better educate the public about HPV so that receiving an HPV positive test result doesn’t feel overwhelming and devastating. It has to start with more open and educated conversations about sex and STIs and what they mean for our health.

Connect with Danah at 206-486-6221 and danah@hpvhope.com
You can read more about Danah’s story in Cosmopolitan’s November STI feature “What Living with an STI Is Really Like.

Join us for a discussion of Dr. Tang’s new book, It’s Not Hysteria Everything You Need to Know About Your Reproductive Health (but Were Never Told), and ask Dr. Tang your questions about reproductive health!