Breast cancer awareness program aims to help Ukraine

by Marta Kolomayets

KYIV - When Ira Zholnova, 44, appeared on a popular Ukrainian talk show, "Bez Tabu" (Without Taboos), in October 2001 and told of her battle with breast cancer, it was the first time that a Ukrainian woman had so publicly spoken out about this disease, which annually kills 3,000 women in Ukraine.

She brought tears to the eyes of the studio audience when she disclosed how after her mastectomy she came home and told her husband that he was free to go, because she was no longer a woman. He swept her into his arms and said, "I married you and I will stay with you." Although her husband did not leave her after her surgery, he refused to appear on the show to discuss this emotional situation.

"Ukrainian society is just not ready for such openness," said Dr. Halyna Maistruk, a gynecologist and leading breast cancer expert in Kyiv, who founded a breast cancer support group called Women's Health and Family Planning Charitable Fund.

A quarter century ago, the topic of breast cancer was also absent from public discussions in the United States. First Lady Betty Ford did much to raise awareness about this topic when she was diagnosed with breast cancer months after her husband assumed the office of president of the United States, in 1974. "Maybe if I, as first lady, could talk about it candidly and without embarrassment, many others would be able to do so as well," she explained during an interview after her ordeal.

Mrs. Ford, Happy Rockefeller and Betty Rollin, author of the book, "First, You Cry," brought the topic of breast cancer out of the closet in the United States in the 1970s. In the 1990s the breast cancer storyline in the popular sitcom "Murphy Brown," resulted in a percent increase in the number of women who went for mammograms.

And now, in Ukraine, a group of non-governmental organizations (NGOs) is taking the lead in raising awareness about this disease among the population. Statistics are grim in Ukraine: more than 15,000 women annually are diagnosed with breast cancer. The mortality rate for this disease is one of the highest in Europe; 20 percent of them die within a year because the cancer was not detected early. (Close to 40 percent of patients are diagnosed with stages 3 and 4, compared to 5-7 percent in the United States in the same stage of the disease.)

Some of the reasons for these statistics are Ukrainian women's limited access to information about breast cancer and the lack of equipment for early detection.

"We are not a culture of preventive medicine," added Dr. Maistruk. "People believe that breast cancer equals death, so there is no reason to start any kind of treatment," she added. "We don't have a screening program in Ukraine and we use diagnostic equipment only for those women who already have breast cancer," she noted.

Slowly, however, attitudes are changing; women's support groups help breast cancer survivors and their families; NGOs are beginning public awareness campaigns throughout Ukraine to inspire women to fight the battle.

Although over the past two years, women's magazines in Ukraine have started writing about such issues. Yedynstvenaya, (Only One) a Russian-language monthly women's magazine began the dialogue in 2001, dedicating a series of five articles to this topic. Together with Avon-Ukraine and Dr. Maistruk, the magazine not only highlighted the importance of self-exams, but talked to women who are breast cancer survivors, bringing such topics into an open forum for discussion.

In April 2002 a coalition of civic organizations, including the Center for Reform Education (CURE), the Ukrainian Women's Fund, the National Council of Women, Women's Health and Family Planning Charitable Fund, and Winrock International, which is funded by the U.S. government and runs women's programs throughout Ukraine, decided to start a fund-raising initiative to buy a mobile mammography machine. (Since that time the NGOs have been advised against a mobile machine due to the horrendous state of roads in Ukraine and are now concentrating on buying one or two stationary machines, depending on the success of their fund-raising efforts).

"We began with our contacts in the art world. We asked women artists to allow us to use their art work to print up note cards explaining our cause," said Natalia Karbowska, the chair of the Ukrainian Women's Fund. "Then we approached musicians and designers to see if they could contribute their time and effort for such a cause."

The response was good and on November 17, 2002, a charity event was held in the Ukrainian House featuring the singing talents of Oleksander Vasylenko and Pikkardiyska Tertsia, as well as five talented designers, Victoria Gres, Anna Babenko, Oksana Karavanska, Larysa Kononko and Tanya Abramova of the Rito House of Style.

The fashion show attracted a number of ambassadors based in Ukraine, as well as Ukrainian parliamentarians, cultural and community leaders, doctors and journalists.

"These kinds of acts of public awareness can go a long way to educate women about breast cancer," said Iryna Movchan, the president of CURE, which has taken the lead in distributing information brochures throughout the regions on such topics as self-examinations and early detection. "Ukrainians were so impressed that foreign dignitaries would take time out of their busy schedules to address this issue," she added.

U.S. Deputy Chief of Mission, Marie Yovanovitch addressed the capacity crowd of 400 telling the women of Ukraine about the various initiatives in the United States, which today has over two million breast cancer survivors. She underscored that when cancer is detected early in the U.S., the five-year survival rate is 96 percent. "It is time to break the silence about breast cancer," she stated, adding that the NGO community can play an important role in this effort.

Using designers to promote a public awareness campaign is not a new idea. Since 1994, a group called Fashion Target Breast Cancer (FTBC), launched by a group of fashion designers in the United States, has taken this movement overseas, raising more than $25 million.

Tony Staffieri, the FTBC's worldwide executive producer, said recently in Japan - the 10th country where FTBC has launched its campaign to battle breast cancer - that the campaign is "targeting not just breast cancer but awareness, education, fear, shame, embarrassment, ignorance, prejudice and apathy."

But, in Ukraine, this was a novel approach. "As a country in transition, we are still learning this culture of volunteerism," explained Ms. Karbowska. "Our mission is twofold: we want NGOs to unite to show that there is strength in numbers and we want to introduce the notion of philanthropy in Ukraine."

"It is also important to show grassroots initiatives," added Ms. Movchan. When this writer, who is project coordinator, began talking to her friends in the United States and Canada, they, too, supported this idea of promoting breast cancer awareness through fashion. Thus, the fashion show became a road show traveling to Chicago, Detroit, Toronto, Washington, and New York.

All of the coordinators in the five cities agree that this will be a landmark cooperative effort between NGOs in Ukraine, the United States and Canada. It is perhaps the first time that an endeavor of such magnitude is being organized by women's groups on both sides of the Atlantic.

"This is a very tangible way to help Ukraine - a mammography machine is such a real way to help Ukrainian women. Health concerns are immediate," said Marta Zielyk, who is on The Washington Group's organizing committee.

"And it is gratifying to see that women in Ukraine are trying to help themselves. It's good to see them taking their own health matters seriously and I think that should be applauded and supported," she added.

Although there are close to 300 mammography machines in Ukraine today, less than 100 are in good condition, according to Dr. Maistruk. "Most of this equipment is over 15 years old, and the average lifespan of a mammography machine is three to four years," she added.

There is not one digital machine in Ukraine's public hospitals, she added. And such oblasts as Poltava, Zaporizhia, Vinnytsia, Sumy and Ivano-Frankivsk do not have any mammography machines at all in their oblast hospitals.

To date, through the efforts of the NGO coalition, more than $11,000 has been raised to buy at least one machine for the neediest region. But this is hardly enough. A good mammogram that includes a film-developing machine can run anywhere from $75,000 and up. Once that money is collected, the women's groups will assemble a tender committee, composed of doctors, leaders of NGOs and representatives from the Ministry of Health to announce a competition for the regions. Then, they will announce an open and transparent competition to award a hospital a "Life is Beautiful" mammography machine, complete with a plaque honoring those committees that have made the purchase of a mammography machine possible.

"I understand the Ukrainian women's daily difficulties and appreciate their sometimes harsh circumstances. Many more hurdles are present for a Ukrainian woman and conquered in daily life, as compared to an American woman. To have life further complicated with an illness such as breast cancer in a country where minimal proper medical care and support is available, I am only hoping our small effort in New York can help make at least one woman's life in Ukraine a little easier," said Melaniya Hrybowych-Temnycky, the coordinator of the event in New York City.

For Anya Szepetyk of the World Federation of Ukrainian Women's Organizations in Toronto, raising money for Ukraine is a regular activity. "Our member-organizations have been actively involved in raising funds for medical supplies and technology to assist people who have been affected by the Chornobyl tragedy. This is just another way of helping out," she said.

According to Dr. Maistruk, "The incidence of breast cancer in women is 2.2 times higher than it was 17 years ago, before Chornobyl." Indeed, studies have proven that besides genetics, environmental pollution also can contribute to the incidence of breast cancer.

And, the women who are affected in Ukraine are younger; according to Dr. Maistruk, doctors now see women with cancer in the 35-45 age group, as opposed to women in the West, where the most vulnerable age group is over 65.

As Marta Farion, the chair of the Chicago-Kyiv Sister Cities Committee explained, the problem of breast cancer is all-embracing. "It affects both men and women because the impact is universal. There is not one person that does not have either a family member or a friend that has been a victim of breast cancer.

These are not just Ukrainian problems. The reason why we have so many volunteers and enthusiasm for the event in Chicago is because everyone has been affected by breast cancer and people feel universal solidarity on this issue."

She added, "Our goal at the Chicago Sister Cities Program is to bring Ukraine and its issues to the attention of the world at large and to be able to go beyond the local Ukrainian community for support."

Chicago has been able to do just that: the honorary chairwoman of the event is Maggie Daley, herself a breast cancer survivor and the wife of Chicago Mayor Richard Daley.

In Toronto, the honored guest will be Sen. Raynell Andreychuk, a Ukrainian Canadian who has served in the Canadian Senate since 1993. One of her top priorities is focusing on the health concerns of Canadians. Now she wants to familiarize herself with the health issues of Ukrainian women.

In the U.S. capital, according to The Washington Group, which is organizing the event together with the Ukraine-U.S. Business Council, the Ukrainian National Women's League of America Branch 79 and the Ukrainian Association of the Washington Metropolitan Area, the venue seeks to attract diplomats from other countries, as well as U.S. congressmen. The fashion show will be held at the Embassy of Ukraine, located in the prestigious Georgetown section of the District of Columbia, the nation's capital.

In New York, guests will be treated to a fashion show by Ukrainian designers, featuring models formerly of Ukraine on the catwalk. Among those who will be wearing the haute couture will be Miss Ukraine 1996, Natalia Shvachko.

Interestingly, some of the New York City committee members, who are volunteering at the Ukrainian Institute of America to organize this event, are first-generation Ukrainian women who are now working in the Big Apple at investment banks, design houses and consulting firms.

"I think it is very important that our team is a combination of Ukrainian diaspora women from New York and New Jersey. I believe that it will promote closer ties between the diaspora and Ukrainians from Ukraine, and it will attract a wide audience to this charity event," said Natalia Bruslanova, originally from Kyiv. "We have such a talented multi-dimensional team."

"I am very proud to be working on this committee with young professional women from Ukraine who are now living in New York City. I feel that our cooperation together is somehow our little piece of history in the making. By working together perhaps we can begin to understand each other a little better and look deeper into each other's lives to see our similarities and differences. These types of experiences always broaden participants, knowledge of the world, other cultures and themselves," said Ms. Hrybowych-Temnycky.

It will also broaden the experiences of the three designers, who will be bringing over 20 signature designs, as well as accessories, such as necklaces, belts and handbags, to the fashion road shows. For all three, it will be their first showings in the West.

"We were intrigued by the idea of combining fashion and charity," said Ms. Karavanska from Lviv. "This is one way I can use my talent to turn attention to breast cancer, to tell women that they need to pay attention to their health."

"For me, as a woman, it is very important to support women's organizations. My designs are feminine, very 19th century, and I like to think that my participation in these fashion shows will not only allow women to share beauty, but to also share important information, which in turn will make their lives more harmonious and healthy," said Ms. Gres.

Vera Petrusha, a member of the Metro Detroit fund-raising committee, said, "When Marta Kolomayets contacted me regarding the 'Because Life is Beautiful' project, I thought, what a wonderful initiative, educating Ukrainian women about breast cancer and helping them by raising funds for mammography machines."

"I reached out to the women in the metro Detroit area who held key positions in Ukrainian organizations as well as supporters of UCARE [Ukrainian Children's Aid and Relief Effort]. The interest and enthusiasm was immediate, and the work began with a great deal of excitement," Ms. Petrusha continued. "Eileen Jewell, a well-known local interior designer and a sponsor of orphans in Ukraine, graciously offered her new studio in the trendy city of Royal Oak, as a location for our event. Dr. Renata Juzych-Kucyj, the president of UMANA [Ukrainian Medical Association of North America, Detroit Chapter] contacted Clear Magazine, an international fashion magazine and they in turn became sponsors of our event and have supplied the contacts for all of our models."

"I really like the slogan for this campaign: "Because Life is Beautiful." It has a positive spin," added Ms. Zielyk. And even the symbol of the pink ribbon is now seen on women's suit lapels and dress collars in Ukraine. Avon has been instrumental in this campaign, also raising money for mammography machines through the sale of pink ribbons and breast cancer awareness pens in silver and gold tones, complete with pink ribbon ornaments. It has become a symbol not only of breast cancer awareness throughout the world, but also of a united sisterhood.

Women around the globe continue to encourage screenings for early detection of breast cancer, which women worldwide continue to fear more than any other disease. Yet, this cancer is 90 percent curable when caught early. Although some doctors have questioned the effectiveness of mammograms an international study released in late April shows that mammograms reduce deaths from breast cancer by about 28 percent in women between the ages of 40 and 69.

"Screening works," said Prof. Stephen W. Duffy, a researcher from the British charity Cancer Research. "It reduces deaths from breast cancer. This is not an artifact of some bias, but a real effect of screening," he told Reuters after the release of a report on the benefits of mammograms, which tracked 210,000 Swedish women and is the largest study of its kind. "It suggests very strongly that the reservations expressed in the last couple of years about mammography are essentially unfounded," he said.

Just last week, Ukraine's First Lady, Luidmilla Kuchma addressed the issue of breast cancer during a women's health forum in Zagreb. She joined a group of eight wives of Central and Eastern European presidents - the first ladies of Albania, Bosnia, Bulgaria, Croatia, Hungary, Macedonia, Slovakia and Slovenia - in signing a declaration pledging to fight breast cancer by promoting free breast screening programs in their countries.

The women also stressed the importance of the role of media in the breast cancer awareness campaign, reported AFP, stating that the next such forum will be held in Albania within the next 18 months.

When she talks about the efforts of the NGO community in Ukraine today, Dr. Maistruk likes to quote breast cancer survivor Stella Kyriakides: "Life with breast cancer will never be the same again - we have a voice and that voice is now being heard."

* * *

That voice will be speaking at each and every fashion show in North America between May 30 and June 7. The "Life is Beautiful" breast cancer awareness road show debuts in Chicago and then travels to four other major cities, as follows.

Copyright © The Ukrainian Weekly, May 18, 2003, No. 20, Vol. LXXI

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