Ida Karpinska

Ashoka Fellow
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Poland
Fellow since 2013

Ida Karpińska doprowadza do przeprojektowywania polskiego systemu medycznego w celu rozszerzenia opieki, którą obecnie obejmowane są kobiety chorującego na raka szyjki macicy. Działając, Ida zmienia paradygmat dotyczący zdrowia kobiet i edukacji seksualnej w Polsce. Jej ostatecznym celem jest stworzenie infrastruktury prewencyjnej, która angażuje personel medyczny, wsparcie prawne, media, decydentów i kobiety, będące pacjentkami.

This description of Ida Karpinska's work was prepared when Ida Karpinska was elected to the Ashoka Fellowship in 2013 .

Introduction

Ida Karpinska is redesigning the medical system in Poland to expand the care currently provided to women affected by gynecological cancers. In doing so, Ida is changing the paradigm of women’s health and sexual education in Poland. Ida’s goal is to create a preventive infrastructure that engages medical personnel, legal support, media channels, decision-makers and female patients.

L'idée nouvelle

Based on Ida’s personal experience fighting cervical cancer, she is reorganizing the existing national structures and programs that address the different types of gynecological cancers. Through this restructuring, she is challenging the misconceptions in the field of reproductive health in Poland and across Central and Eastern Europe. She understands all facets of cancer—both on a medical and personal level—and is acutely aware of the significance of public perception and misinformation. Thus, Ida launched Flower of Femininity, a nationwide movement of women to educate society on gynecological concerns, promote treatment methods, and create a network of prevention and support for all women with gynecological cancers.

Ida’s multidimensional approach to cervical cancer provides an effective framework for cooperation between different institutions and organizations involved in prevention, education and support efforts at every level of the healthcare system. Her education and awareness-raising has led to changes in attitude across multiple groups, ranging from teenagers to public officials and midwives. Her primary focus is on women, but she also draws in young men. As a direct result, there has been a significant rise in preventive examinations. In a recent year Ida and her foundation reached over 300,000 women

Meanwhile, Ida has formed a powerful woman-to-woman network comprised of women who have experienced cervical cancer. The network has chapters in 10 Polish cities and includes specialists and well-known public figures—actresses, singers, celebrities and medical personnel—who become Flower of Femininity Ambassadors to help raise awareness and champion better preventive treatment. Having experienced a surprising lack of institutional support during her own battle with cervical cancer, Ida is now forming a complementary nationwide network of medical and legal professionals that provide psychological and practical support to affected women and their communities.

Le problème

Cervical cancer is one of the most common types of cancer among young European women, second only to breast cancer. With 60,000 new cases of cervical cancer each year, it is one of the primary causes of death among women in Central Europe, Eastern Europe and former Soviet countries, where the situation is critical due to low levels of detection. In Poland, nearly 25,000 women die from cervical cancer each year – one of the highest mortality rates in Europe. Furthermore, over 1,200 women learn they have cervical cancer during pregnancy. The statistics are overwhelming when one considers that cervical cancer is entirely preventable, detectable, and curable if diagnosed in its early stages. A major cause of cervical cancer is HPV virus. This infection can be prevented with early vaccination that has been on the market since 2006 but it remains too expensive for many in CEE (at about £200/US$249), and due to costs will not be included in national vaccination programs anytime soon. Still, early screening and effective treatments can dramatically reduce mortality rates.

Cervical cancer is one of the primary causes of death among women in Central Europe and the former Soviet countries.

Any broader progress in reproductive health in Poland is stunted by a conservative and highly religious society which refrains from openly discussing diseases related to women’s pelvic area. While breast cancer has been acknowledged publicly, gynecological cancers remains a taboo topic, and women are often blamed due to assumed “misconduct” in their sexual behavior. Because the church is so highly regarded in Poland, especially among women and their families outside of urban centers, there is a need for creative engagement of religious institutions and their clergy.

There is a dramatically low level of understanding and knowledge surrounding cervical cancer and other types of gynecological cancers, such as ovarian cancer. In addition, common discourse around prevention methods is absent among populations of women and medical personnel alike. While annual cytology could ensure early detection, only 27 percent of Polish women actually do a yearly exam. Very few women know the HPV virus is responsible for cervical cancer in almost 100 percent of cases. There is also both limited access to and lack of knowledge about publicly available tests. There is a desperate need for appropriate knowledge and awareness among different groups, especially mothers, students of medicine, medical personnel, and community-based health centers that directly engage women and their families.

One of Ida’s biggest challenges indeed is the medical system. In this area it fails at prevention, treatment, and helping those who have suffered one of these cancers recover. Medical specialists (especially pediatricians, family doctors and gynecologists) need new training—and retraining—regarding best practices in all three stages, but especially prevention. For example, many doctors still use a stick with cotton rather than a cytology brush for testing. The system now falls short on many other dimensions: female sexuality during and after gynecological cancer, self-confidence, the ability to return to normal life, the process of coping with family, handling legal and work challenges, and other challenges associated with long-term cancer treatment.

La stratégie

Learning from her own painful experience as a cancer patient, Ida established Flower of Femininity, the first nationwide organization to fight cervical cancer and other types of gynecological cancers. Her mission is to create a women-friendly ecosystem that works with both women at risk of cervical cancer and cancer survivors. Ida also seeks to dismantle the taboo regarding a woman’s pelvic area, eventually leading to a higher level of confidence and self-esteem among Central and Eastern European women, regardless of whether or not they have had gynecological cancers.

Ida was the first person in Poland to speak publicly about cervical cancer and reproductive health issues. She emphasizes the importance of regular examinations to reveal the early stages of cervical cancer, but also other types of gynecological cancers. She has launched a number of awareness-raising campaigns, including an educational campaign, “We’re beautiful because we’re healthy.” The campaign includes awareness-creating ads across various types of media as well as coupons in magazines for free cytology tests across the country. The campaign provides information on the low ratio of women routinely visiting gynecologists (including private clinics). Ida and her team have also developed the respected Pearl of Wisdom award to further encourage public debate and the engagement of politicians, public officials, doctors, and journalists who stand up and contribute to raising awareness of the problem.

Ida has developed a series of programs fitted to different groups and goals. Her Wise and Careful program promotes healthy sexual behaviors among female and male students, in the process breaking unhelpful taboos. Together with Flower of Femininity Ambassadors and specialist physicians, she manages the Young and Healthy program for girls ages 12 to 18, teaching them the importance of regular visits to the gynecologist.. Addressing the need for broader awareness on cancers related to women’s pelvic area, she designed another program, Egg Smarter Than Hen, to bring mothers and daughters together to discuss ovarian cancer and sexuality (with the idea that once the daughters begin sexual activity, they need to do annual cytology tests and regular overall exams). Ida’s educational efforts are also directed toward uterine cancer, fallopian tube cancer, and vulvar cancer (vulvar intraepithelial neoplasia), which is caused by the HPV virus.

Ida believes in the power of the female network. Therefore, along with engaging celebrities such as well-known actresses, she links women who have experienced cervical or ovarian cancer to share their stories and experiences. She has found this to be a powerful messaging tool.

One of Ida’s most effective strategies outside of cities engages mayors and local authorities. Beyond organizing meetings and workshops directly with public employees, she engages their leaders in educational workshops for municipality employees and public institutions. One of her main messages to local authorities is that “healthy women are healthy employees.” Ida supports them to design health prevention programs for their municipality and combines it with HPV vaccinations for girls. A number of municipalities and mayors have embraced the program in their local budgets and continue annual vaccination programs.

Another supporting group is comprised of companies and every employees, beneficiaries of Ida’s educational efforts (through workshops and meetings with women who have experienced cancer). They support her mission with their skills and competencies. A recent partnership is creating the first Polish app for smartphones to remind women of important dates, such as annual breast cancer exams, cytology and other check-ups that women need at different ages. Through all of these channels and strategies, Ida is able to reach hundreds of thousands of Polish women of different ages and socioeconomic status on an annual basis.

In part because all of this work, the media has begun to write about gynecological cancer and use more women-friendly language to describe success stories, which encourages others to take preventative measures.

Ida is effectively using the women-to-women network at the level of prevention and awareness-raising nationally and regionally. She has built a regional network of volunteers (in ten cities in Poland) which she mobilizes as needed for educational programming, but also as a peer-to-peer support network for women that have faced the disease, or are in treatment. This group of 60 volunteers is in regular contact with Flower of Femininity staff and mobilizes more women for events, such as visits to the women’s oncological wards during Christmas. Along with her staff, Ida is also reaching out to medical staff at hospitals because they deliver information and inspire patients. Her women-to-women strategy resulted in another program, Women for Women, in which she helps women to understand the importance of routine exams.

Ida’s network has also successfully mobilized local medical specialists to promote the most effective methods of cytology testing to their peers. For example, gynecologists using a “testing brush,” able to penetrate the cervix and provide more accurate test results. To implement her strategy, Ida designed the Golden Standards for gynecology clinics, to ensure that every woman that enters a consulting room will have an in-depth conversation about her health, regular palpation breast examination, cytology with a testing brush, and more. The Golden Standards have been adopted by over 200 clinics across Poland and unified under the logo, “Clinics under the Flower.”

Ida plans to reach over 1,000 clinics by the end of the year and thousands more in the coming years. Through her work with medical personnel and specialists, Ida is addressing the systemic and educational requirements in the gynecological profession (i.e. patient approach, psycho-oncology, and more). Moreover, Flower of Femininity is known as an expert in the field of cervical cancer. Ida is engaged in conversations at the ministerial level to address issues of accessibility around medical examinations, services, and the possibility of co-funding with the state for HPV vaccinations. To achieve those changes at the national level, Ida draws in and partners with the major oncological organizations.

Ida’s long-term plan is to continue educational awareness work to increase the ratio of women visiting gynecologists and doing cytology tests. To sustain the operations and enhance her vision at the regional level, Ida has a sound business strategy that includes partnerships with corporations in the form of donations and fees for educational services. Next to traditional sources of funding, like grants, Flower of Femininity fundraises through its online presence and has launched an online shop with gifts related to the awareness campaigns.

La personne

Ida grew up by the seaside with her parents. As a teenager, she was very sociable, surrounded by female friends with whom she loved to partake in theater performances in school and in her courtyard. At the age of 18, Ida became a business entrepreneur and with her mother, set up several shops selling beauty products. She was quite successful. Then a “love at first sight” encouraged her to move to Warsaw, where she built a career in the entertainment and movie industry as a stage designer and stylist.

A change came suddenly and unexpectedly as Ida, reminded by her mother, had her annual cytology test and discovered she had cancer. A detailed examination confirmed this diagnosis and led Ida to withdraw from her activities. It took her a week to leave the house and seek help. Ida didn’t have enough information about the disease, methods of treatment, and chances for recovery. Doctors didn’t seem to have the time or patience to provide explanations in simple language. However, unlike many women at her stage, after surgery, radiation and chemotherapy treatments, Ida overcame her cancer.

The disease transformed Ida. Her experience with the medical system was challenging and painful, and she felt an urge to share her experiences given that cervical cancer is a taboo topic in Poland. She brought together her female friends from the entertainment industry, including journalists, to share her story and encouraged them to describe it for other women. Ida was puzzled when they declined, explaining that it was an embarrassing topic and not interesting for media. Eventually she convinced friends to publish her story along with her phone and email address. The response was overwhelming. For several months after, Ida listened to women’s stories. Though similar to hers, many had tragic endings. Ida became close with many of the women and she soon learned that the situation of women with gynecological cancers is dramatic. She decided to transform this network of friendship and support into a more structured entity to work toward repositioning women, strengthening them, and placing their health challenges at the center of a caring and supportive medical structure.