Month: March 2021

PREVENT HPV Cancers Act Raises Visibility of Cervical Cancer to Congress

Cervivor is excited to share that recently, timed to International HPV Awareness Day (March 4) the “Promoting Resources to Expand Vaccination, Education and New Treatments for HPV (PREVENT HPV) Cancers Act” was introduced in Congress by Rep. Kathy Castor (D-Fla.) and Rep. Kim Schrier, MD (D-Wash.).

With a focus on health education and health equity, the PREVENT HPV Cancers Act (H.R. 1150) would: 

  • Create a CDC-run national public awareness campaign to increase HPV vaccination rates (especially among males and communities most impacted by HPV cancers) and increase Americans understanding of HPV-associated cancers.
  • Increase funding at the National Cancer Institute to expand, intensify and coordinate research on HVP-associated cancers.
  • Give states additional resources to improve their immunization information systems
  • Focus on early detection by expanding funding for the CDC’s Cervical Cancer Early Detection initiative to make sure we are getting the resources out to underserved communities since they are all too often bearing the brunt of cervical cancer deaths.

We are thrilled to have champions in the halls of Congress who are committed to cancer prevention, generally, and to education about the HPV vaccine specifically. HPV is linked not only to cervical cancer as we all intimately know, but also to vaginal, vulvar anal, penile, and oropharynx (head/neck) cancers. Altogether, approximately 35,000 cases of cancer are caused by HPV each year in the U.S., impacting both women and men. 

The two House sponsors of this bill shared why this is an issue they are attaching their name to and standing behind:

“It’s the goal of the PREVENT HPV Cancers Act to increase vaccination rates with an eye towards health equity. I’m pleased to introduce the PREVENT HPV Cancers Act to boost vaccination rates and ensure that all communities – especially the underserved – are being educated on the importance of cancer prevention and screening. Americans are dying from [HPV-related] cancer when they shouldn’t, and our bill provides a strong commitment to health education and equity that will save lives and decrease racial disparities in diagnosis and treatment.” – Rep. Castor 

“As a parent and pediatrician, I want to keep my child and my patients safe and healthy. The HPV vaccine prevents cancer! My son has gotten his HPV vaccine, as have my patients; and I know that the most important factor in whether a parent chooses to immunize their child is a conversation with their healthcare provider. There is so much mistrust and vaccine hesitancy out there, and while immunizations are one of the greatest public health tools we have, they work best when there is widespread use. That’s why I’m excited about this bill. It will help spread awareness so more people get vaccinated, and also fund research to prevent death from HPV-related cancers,” – Rep. Schrier, MD.

We at Cervivor lent our support to this legislation and are quoted in the press release from the two Congresswomen that announced the new bill. In a few short sentences, Cervivor founder Tamika Felder showed the human impact of this bill, beyond the facts and figures: “ I was diagnosed at age 25 and lost my fertility and nearly my life. HPV is extremely common and when it becomes cancer it can be deadly. We have the tools to prevent cancer, there is no reason why we shouldn’t. I am proud to use my voice to support the Prevent HPV Cancers Act,” shared Tamika

Also publicly supporting the bill were not only other cancer prevention organizations (including the Prevent Cancer Foundation,  Society of Gynecologic Oncology and Association for Clinical Oncology) but also leading national health organizations (the American Academy of Family Physicians, American Association of Immunologists, American College of Physicians, American Dental Association, National Association of Chain Drug Stores, National Association of School Nurses, Society for Adolescent Health and Medicine, and more.)

Our voices and our stories and our advocacy will be important to move this bill forward. The introduction of a piece of legislation is only the start of a looooong chain of legislative steps that can ultimately lead to bill passage (or not). Bill passage can take years. Bills can get folded into other legislation. Bills can get debated by committee but never elevated to the House or Senate floor for a vote. In this case, the bill was sent to the U.S. House Energy and Commerce Committee, but so far, there is no companion measure over in the U.S. Senate. So there is a long road ahead… 

On the other hand, the introduction of a bill is itself a win! It means that members of Congress and their staff are paying attention to this issue, and Congressional attention can translate to media attention and enhanced media coverage. It means that there will be future conversations as the Congressional sponsors seek other co-signers and supporters. We at Cervivor, are in it for the long haul, advocating and  sharing our stories.

Walk a Mile in My Shoes

To me this is a no-brainer: when a person has a chronic medical condition that they manage every single day, it does NOT mean they are supposed to stay in bed for the rest of their lives. At the same time, it also doesn’t mean they should extend themselves to the point that they are just making their condition worse by pushing thru pain to be “tough” or “brave.”  Some conditions will get progressively worse if you don’t adjust your lifestyle and take preventative measures.

I speak from experience. I have lymphedema in both of my lower extremities. Most recently, I have been battling what we think is neuropathy. The latter is much more painful to me than the lymphedema, but I’m not even sure what is what when it comes to the pain. All I know is that it hurts terribly.

I enjoy walking. That is one of my favorite stress relievers and a way that I stay physically fit. Gaining weight is very bad for my lymphedema so I try to stay moving, even if they are short now because of pain. Still, I do many things to keep myself smiling and positive because if you don’t have your mental health at the end of the day, what do you have?

Anyone that battles lymphedema or neuropathy knows it is a constant balance between sitting and standing. When I’m having a “bad day” my medical paperwork says I’m supposed to only work for four hours a day, three days a week. If I’m having a “really bad flare up,” I am supposed to keep my legs elevated all day. We all know that’s not feasible when you are trying to work every day and show up for your employer. It’s very stressful constantly trying to play catch-up and run out the door for another doctor’s appointment.

Someone made a comment to me the other day that really hurt my feelings (I cried). In short, they questioned how I could be out and about and yet still be so “sick.”  I have since processed it, and I realize that anyone that questions my pause from teaching does not know my struggles or my story. They do not know medically what is going on with me. For them to assume that I am “supposed to” stay in bed and not go on a walk or do anything fun, well that would also be detrimental to my mental health.

They are not in my shoes. They probably couldn’t even find my shoes on the shelf. If they could, they would know this:

I am constantly worried that I might have an accident because that’s what now happens sometimes because of the radiation to my bowels. It is very common among women like me who have withstood grueling treatments for cervical cancer. It’s a nasty side effect. God Bless Imodium!  Fellow Cervivors and I jokingly say that we need our own diaper bags. We can laugh about things such as bodily functions, but it doesn’t mean it’s fun or funny. It never goes away. We are just lucky to have a sense of humor about it because at the end of the day, what else can we do?

When you ask me to go boating or out to dinner, I worry that I will ruin the fun because my feet/legs will hurt and I won’t be able to even focus on the conversations around me. The pain can make me nauseous and I feel like I want to throw up. Sometimes my eyes will randomly tear up just because I’m so tired of the gig. But the gig is my life so I can’t take a vacation from myself.

When I’m trying to get to work on time, I may seem frazzled when I arrive, It’s not because I’m not trying my best. Some mornings the thought of standing hurts before I even get out of bed because I know what it’s going to feel like when I do. Sometimes I’m changing my clothes at the last minute because I had an accident as I was walking out the door. Such fun! At any random time that you are with me, I’m probably fantasizing about taking a hot bath. There’s something about chronic pain, stress, and physical exhaustion. Bad recipe.

Before you judge me (or anyone!) and try to critique me based on your idea of what a “sick person” does with their lives, try to put yourself in my shoes. You truly don’t know, unless you have lived it. Take a walk with me and let’s see what happens!  Remember, you don’t know my reality until you have actually walked a mile or two with me or next to me. This post isn’t just for my own situation, but it’s for all of us cervical cancer survivors and those with chronic pain or chronic illness who have dealt with the judgement of others.

I’m posting about this, because I’m trying to create awareness and empathy. People are beating cancer much more than they did decades ago. Yet with surviving comes long-term side effects that sometimes become progressively worse with time. Our bodies know the score. When discussing taking a break from work, a coworker said to me, “your body already made the decision for you.” She’s right. It did. And I had to take something off my plate so I could feel better physically/emotionally. I’m taking a knee right now for myself. And no, I will not be staying home in bed in a dark hole every moment of my life. I will keep on living and enjoying this life that I have fought so hard to enjoy. I am a real person and this is my life. Thank you if you are someone that understands. I love you. If you are part of my amazing tribe and you don’t feel you understand, please just ask in a supportive and loving way.

Shawna Christy, 46, was diagnosed with cervical cancer in 2005. Treatment included removal of her cervix, uterus, 1/3 of her vagina and more. Though surgery and radiation helped her beat cancer, “the hard parts came later” – like chronic pain together with PTSD and the emotional, hormonal and spiritual challenges of being a cancer survivor. Shawna plugged into Cervivor for community and support. In 2016 she attended Cervivor School and became a Cervivor Ambassador who uses her voice and her experiences to open conversations and “change the narrative.” She lives in Ottumwa, is a proud mother of daughter (Korynn, 18) and son (Kyler, 16). She is grateful for time with her besties and husband, Allen. This year she is taking time off from teaching first grade to focus on her health to better manage her pain.

Read Shawna’s Cervivor Story or her previous blog “Cerviving with Lymphedema”

See other Cervivor blog posts about lymphedema: “My Under Armor: Do you know about lymphedema?” by Heather Banks