Interview with Petra Adamkova, Czech Republic
World Gynecologic Oncology Day was so happy to sit down with Petra Adamkova for an interview on Instagram Live. Petra is the past Co-Chair of the European Network of Gynaecological Cancer Advocacy Groups (ENGAGe) and the former Chair of World Gynecologic Oncology Day. If you got an email from us in the last four years, chances are it came from Petra!
We discussed her patient advocacy work in the Czech Republic with OnkoUnie, Hlas Pacientku, EUPATI and throughout Europe. Read below for an excerpt of the transcript (edited for length) or watch the whole interview on our Instagram Reels!
World Gynecologic Oncology Day
We're doing our very first live interview for this year's campaign, which is GO Against Stigma. And I have with me here the lady who you have been getting newsletters from for a long time: Petra Adamkova! Thank you so much.
Petra, can you tell us a bit about yourself and your journey.
Petra Adamkova
I'm based in the Czech Republic, from Prague. It's my hometown. My home organization is OnkoUnie. We support patients with gynecological cancers and also especially metastatic breast cancer. So it's about women's health, in fact. Then I'm chairing the umbrella organization here in the Czech Republic, Cancer Patient Voice, from all oncological and hemato- oncological patients, and I'm running up the national platform. And of course, I'm past co-chair of ENGAGe.
World Gynecologic Oncology Day
How did you get started as a patient advocate?
Petra Adamkova
In 2013 one small nonprofit organization wanted me to write a press release about a women’s health service. And it was it based an organization supporting informal carers. So it means people who is, who are in long term care, caring about the about people with chronic diseases, or parents with disabled students and so on. And then in 2015 I joined OnkoUnie
World Gynecologic Oncology Day
Okay, nice. So you have more than a decade of experience working within patient advocacy.
Petra Adamkova
It will be, yeah, more than decade Yeah, wow.
World Gynecologic Oncology Day
What are your organizations known for in terms of working with gynecological cancers. You mentioned OnkoUnie is working a lot with breast cancer,
Petra Adamkova
Yes, of course, also with breast cancer, because we would like to find gaps in our Czech market and to fill them with our projects and education. We are focusing on educational campaigns and raising awareness campaigns. My profession is public relations consultant, and I do still this job.
I think we are lucky in the Czech Republic. We have a lot of patient involvement here. We have a special department at our Ministry of Health, and we have the patient academy for patient organizations to increase capacity building and so on. And I think we are very engaged here, and we are trying to be at the table everywhere with our stakeholders.
Communication about cancer is very difficult in our societies. It’s more open in breast cancer, but metastatic breast cancer is not that way. I think it's very, very important to talk and to communicate, because it's a stigma to have cancer. And I think this year's topic of World GO Day, it's really important because they go against stigma. It doesn't mean that I will do something against stigma, but I can talk
about cancer.
World Gynecologic Oncology Day
You've done some amazing work. Can we talk about that? So you started with World GO day in 2020. What are some of the milestones?
Petra Adamkova
Thank you. Maybe the newsletter, yeah. And to see the different events that people came up with to celebrate or to observe World Gynecological Oncology Day has been really interesting. I mean, we've had groups in Singapore going on walks. We've had some amazing dances and speeches in Venezuela. We have petanque players or swimmers. It’s very nice.
So the original idea was “go for”, for an action—for a sport event, or something like that, and there have been so many ideas around the world. It’s really great. I really appreciate it. And thank you all of you, and all people who are who are engaged and very engaged and will be engaged in the workload!
World Gynecologic Oncology Day
Tell me about some of the things that you've done here in the Czech Republic, because OnkoUnie and Pacientska Organizace Veronica have both teamed up for World Gynecologic Oncology Day here.
Petra Adamkova
We are two organization here in the Czech Republic, supporting patients with gynecological oncology diagnosis. And we are, yeah, still, since 2019 we are organizing the purple bike ride. Which is a very active, very healthy and also very visible activity.
World Gynecologic Oncology Day
And why purple?
Petra Adamkova
Because every cancer has cancer ribbons, yes. And the color of gynecologic oncology diseases is purple, and therefore purple.
World Gynecologic Oncology Day
You’ve had some success getting the bike ride in the media here. Can you talk about that?
Petra Adamkova
Oh yeah, I'm very happy, because I think the World GO Day is an opportunity to raise your voice, to talk about cancer, talk about gynecologic cancer, about all consequences and quality of life of patients and so on. And we are very happy here that we engage also media, on the television and also radio. And a lot of articles were printed. And I hope this year we will use also this opportunity.
Every year we have more and more interest in it.
World Gynecologic Oncology Day
And in addition to the bike ride, I remember some yoga?
Petra Adamkova
This year we would like to go more into the movement, or, again, some some sport activity. So we are preparing something, but it's still a surprise. It will be a surprise for you!
World Gynecologic Oncology Day
Very good. I'm looking forward to the surprise!
Petra Adamkova
September 20!
World Gynecologic Oncology Day
This year's World Gynecologic Oncology Day, as we mentioned, is based around stigma—lifting the stigma about gynecological cancers, starting conversations about gynecological cancers—so that people understand the risk factors, so that they don't hesitate to get screening, so that they can talk to their friends and just have a better idea of what gynecological cancers are and how they should be treated, and also, as we had mentioned, getting it up to the governmental level and for the infrastructure and support. So what kind of stigma is present in the Czech Republic?
Petra Adamkova
I think we don’t have something specific, but we would like to take it in a positive way, because patients with cancer, all cancers, have stigma. It's very, very visible, for example, in lung cancer, smokers and so on. It is visible and well known in the society. But gynecologic cancers, people don't talk about it, and it's sometimes more difficult, because it goes into the silence.
This is also my dream for the future, that cancer will not be a taboo in our society, because, yeah. For example, we have disabled people, and maybe 30 years ago, before the revolution in the Czech Republic, in the communist era, nobody talked about or with--even with!—people with some handicap. Now we have Star Dance [on TV] and people in wheelchairs dancing. And I think this is, this is maybe a good comparison, how it could be with cancer.
And we can look at breast cancer. People now talk about breast cancer, and it's even more normal now,
World Gynecologic Oncology Day
And relating to stigma and and the way that society is changing its acceptance of certain topics, you mentioned before, off camera, about the HPV vaccinations in the Czech Republic.
Petra Adamkova
We are also lucky in the Czech Republic. We have vaccination for girls and boys, and now the time for vaccination is is prolonged, and it's from 11 to 15. Our big challenge to convince people to get vaccinated, to get parents to get their children vaccinated. I think it's very important also for boys, because cancer related with HPV is increasing every every year, more and more. And it's not only for cervical cancer, for girls or for women, but also head and neck cancer for for men.
But there's a huge stigma, I think, about both HPV and vaccinating boys for HPV. So, yeah, it's great that that is already being overcome.
World Gynecologic Oncology Day
What would you like to say to gynecological cancer patients who encounter stigma?
Petra Adamkova
It's very difficult. I can't advise nothing, because it's really individual, and every patient is different, and every patient is also individual treatment and different body, the side effects are different and so on, and also the psychological feeling or some somehow, every human being is different. So I can't advise them, but I think the most important thing to is to be informed.
To be informed about the disease, about all possibilities and challenges and situations, and to have someone with whom the patient can talk. It's the most important thing, and even it could be just a friend or a psychologist, but it doesn't matter. But I think that to be open and to say what is what is happening is very important.
World Gynecologic Oncology Day
Starting that conversation!
Could you you mention your Cancer Patients Voice organization? Because it's quite interesting.
Petra Adamkova
Cancer Patient voices is an umbrella. We are 12 organizations here in the Czech Republic, and I think it's very useful to go out from our diagnosis bubble, I can say, because we know that oncological patients have, you know, similar problems, and we can find really umbrella topics, and we can, we can easily cooperate and cooperate for for all kinds of patients. And what I see now, what is a very important topic, is survivorship. And this is very connected with the quality of life, and with many years of mapping, of monitoring, side effects.
World Gynecologic Oncology Day
And you wanted to also talk about bringing EUPATI to the Czech Republic?
Petra Adamkova
EUPATI is the European Academy of Therapeutic Innovations—eupati.eu if you would like to see the website—it's really a comprehensive training for patients and patient advocates, about R and D, about research and development of new medicine. It's from building the whole process, clinical trials, phase 1,2,3, 4, marketing, access and so on. And it's very important that patients and patient advocates know about it, because it brings them the context of whole environment and the whole treatment and everything, how they can be involved in maybe clinical trials or other many other things, what are now possible.
World Gynecologic Oncology Day
Is there anything else that you'd like to say to people who tuned in today, or somebody who might watch this when we do a replay [or read a transcript!]?
Petra Adamkova
I am very happy that you are all here. Thank you very much. It makes me really so warm, or I don't know how to say it!
And yes, join us. Join the World GO Day. And even you don't create a big event, it doesn't matter, just wear something purple and go for a walk to a forest.
And yeah, support all gynecologic oncology patients. And be prepared to talk, to communicate, and to maybe answer questions, or to ask—ask us, ask doctors or friends. Bring this topic to be more open in the public and not be a stigma.
World Gynecologic Oncology Day
Yeah, start the conversation! Don't be afraid to have a conversation with your friends, with your doctors, and join us. On September 20—and almost every day on social media—in trying to lift the stigma about gynecological cancers. So thank you so much, Petra!