The Dr. R. H. Yolyan Hematology Center building where the Center of Pediatric Oncology and Hematology of Armenia is located

Pediatric Cancer Treatment in Armenia Continues to Need Support

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YEREVAN – Yerevan’s Center of Pediatric Oncology and Hematology of Armenia, the sole center for treatment of cancer for children in Armenia and Artsakh, continues its work under difficult conditions after the Artsakh war and the ravages of Covid-19. The City of Smile Foundation provides funding and other types of support for its operation despite the new set of difficulties, according to foundation director Ester Demirtshyan.

Esther Demirtshyan

Demirtshyan said that from October 2018, the center and its predecessor institute began to provide free treatment for all children and young people up to the age of 25 years old suffering from cancer or blood disorders. Around 350 individuals benefited. On a monthly basis somewhere between 80 to 100 are treated and fully funded by the foundation. There is no selection based on socioeconomic status, she stressed, but anyone in this category who comes to the foundation will get the financial support for treatment.

Even before the recent war, 20-30 percent of the children were from Artsakh, since there is no similar center there, and there are even Armenians from Javakh in neighboring Georgia. Demitshyan said that she fears that in 3-4 months there will be greater numbers of patients from Artsakh since stress is a contributory factor to leukemia.

The financial support provided by the City of Smile Foundation is indispensable for 95 percent of patients. “We don’t want families to collapse financially and emotionally. We understand that cancer treatment is not affordable even for middle class families in Armenia,” Demirtshyan said. She related that recently the foundation bought medication for child that cost $2,500. The child’s mother asked whether they would really pay for this, as it cost more than her housing. Demirtshyan replied that they would certainly pay for it, as well as all the following treatments that the child would need.

The average expense per course of treatment for a child in Armenia is 20-25,000 dollars, while in the US it is half a million dollars. In the US the greater resources permit some 90 percent of the patients to be cured. Armenia at 70-75 percent now still cannot reach this rate, but it has improved a lot from only a few years ago, when it was as low as 5 percent.

The hospital where the center is located is government supported. The Ministry of Health is responsible for the costs of the facility and rooms, and the salaries of the doctors. The hospital may receive one or two types of medication through the Armenian Ministry of Health, but the rest has to be purchased through the foundation.

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The foundation expends approximately 60-75,000 dollars a month, which covers the costs of chemotherapy, radiation therapy, surgery, all kinds of lab tests, and constant social support to the children and their families. The meals of the children in the hospital are paid for so they can have the strength to withstand chemotherapy. This is important also because 70 percent of the children in the hospital come from the provinces and this makes it difficult for parents to provide freshly cooked food.

Everything was going well in 2019. Demirtshyan said that fundraising through visits to the communities in the US and elsewhere allowed new initiatives to be realized. One important step taken, which is taken for granted during treatment in the US, is the use of anesthesia for all procedures. In the past, many procedures were done without it because it requires payment, but the foundation was able to provide regular funding for its use.

Concurrently, the use of mediports was instituted, which in the US are commonly used. Instead of poking veins each time chemotherapy is needed, a port is inserted into the body. Their use saves veins from damage and alleviates pain. An honorary board member and adviser, Dr. Shant Shekherdimian of the Geffen School of Medicine and the University of California Los Angeles Health trained one of the Armenian doctors and the foundation funded the devices.

Cynthia Kazanjian, a dedicated volunteer who has played a key role in fundraising in the US, noted, “In 2016 and 2017, when I first went there, I would walk up and down the halls and hear kids screaming. They had no medication before the mediports were brought in. They just used lidocaine. Today, they would not dare put in a mediport without anesthesia.”

It was possible to provide some additional support to the children being treated in 2019. Demirtshyan said that over 100 events, large and small, were organized at the center to take their minds off their situation. At one end of the spectrum, writers came to read books to children, while on the other, huge troupes of ballet dancers gave performances.

This year, 2020, was very different. First of all, Covid-19 restrictions limited the types of entertainment feasible. For example, performers in the summer came to the backyard of the hospital and children would watch from their windows, Demirtshyan said.

Financially, fundraising has become difficult. Demirtshyan said that doing a few online concerts or events does not produce the same result as in-person events, while costs remain the same. The majority of people in Armenia would not be able to afford these costs but children cannot be allowed not to get treatment, she said, due to funding problems.

Housing for visiting parents is on hold because it was not possible to do the fundraising planned for 2020. Instead, funding available is being used for treatment costs. It will become the first priority of the foundation when the latter are fully assured.

However, one bit of good news is that a palliative care center, the first ever in Armenia, is 90 percent finished. It will have five rooms and be completed in 2-3 months so that it will become operational in the beginning of 2021. This is for children who cannot be saved through treatment, and fortunately donations had already been received for it, though there are still a few rooms with naming opportunities left.

Part of the palliative care center being constructed

Special training of doctors and nurses occurred to a certain degree in 2019 but were put on hold in 2020. The doctors and residents are encouraged to present at conferences. Demirtshyan said that it is important to motivate the younger ones so they feel appreciated and stay in their own country despite incomparably low salaries. They need to do research and learn about new developments around the world. They work with platforms like the Union for International Cancer Control, headquartered in Switzerland.

Demirtshyan pointed out that providing funding for research by Armenian doctors, aside from serving as motivation to do new work, also is important as a way to increase their monthly income a bit. Dedication and passion is important, but people also need the means to support themselves and their families, she said.

The Center for Pediatric Oncology and Hematology is part of the Dr. R. H. Yolyan Hematology Center. All the hematology work in Armenia is conducted here, and some adult oncology is treated too. The Armenian government’s Ministry of Health supports these centers so that the hospital in which they are located is maintained through government funding, and certain medication is provided for the children being treated, but the resources provided are limited. The City of Smile Foundation is physically located at the hospital center although it is not connected with the ministry or government.

Organizational Structure

The City of Smile Foundation was established in 2014 by Drs. Gevorg Tamamyan and Lilit Sargsyan. It only has three fulltime staff members, including Demirtshyan, so everyone multitasks, according to the latter. It has managed to keep overhead less than 10 percent, including the cost of marketing, salaries and taxes.

While in 2019, Anna Hakobyan, wife of Prime Minister Nikol Pashinyan, was honorary chair of the board of trustees of the City of Smile Foundation, she resigned in mid-September this year due to personal reasons, while remaining a board member. As a private foundation, the City of Smile is independent of the Armenian government and all political parties.

Cynthia Kazanjian

In addition to the City of Smile board in Armenia, a City of Smile nonprofit board was created in 2020 for the United States. Cynthia Kazanjian, who spearheaded this process, said that the main purpose was to enable American donors to enjoy tax deductions in exchange for their philanthropy. It took a year and two months to finalize the process, but in the spring of 2020 501(c)3 status was achieved. In the meantime, the Armenian Missionary Association of America supported the City of Smile Foundation with office and clerical help, and tax receipts.

The successful fundraising events in various parts of the US in 2019 led to enrolling nine board members from Boston, Washington D.C., Los Angeles, New York/New Jersey, and Texas. There will be two more spots filled, to make a total of 11. Current members include Cynthia Kazanjian, Acting President (MA), Yelena Bisharyan, Fund Raising (MA), Fr. Martiros Hakobyan, Fund Raising (Houston, TX), Mariya Nagapetyan, Treasurer (CA), Shant Shekherdimian, Board Member and Medical Advisor (CA), Ester Demirtshyan, Secretary / Executive Director of City of Smile (Yerevan), and board members Leon Ariyan (NJ), Naz Atikian (CA), Avo Avetisyan (CA), Jim Kalustian (MA) and Ramella Markarian (CA).

Tracking Donations and Expenditures

When the City of Smile Foundation gives money for a particular purchase or treatment, it asks for a report from the doctor involved, and a separate report from the nurse who would give the item to the patient. Then the two report lists are reconciled. Demirtshyan said that parents nowadays are knowledgeable so it would not be easy for staff to be attempting to get bribes from them. The parents feel entitled to the aid so they would complain if something was demanded illegally, she explained.

Cassiana

On the macro level, Demirtshyan said that the City of Smile Foundation hires a company, usually an experienced 15-20-year-old one, for its annual audits of donations and spending. Those who donate to the foundation directly receive a report of how the money given was spent. Furthermore, quarterly reports are posted on the foundation’s website with every single child or youth’s name and the amount given for treatment for those three months.

Armenia’s tax authorities audit the foundation annually. It submits a report to the government which the tax authorities can check. The City of Smile Foundation does not have to pay taxes on donations it receives but it must pay taxes on purchases, like all charities in Armenia. Incidentally, donations are not tax-deductible in Armenia for donors. Companies can receive a very small percentage of tax-deductions.

When money was raised from the US and elsewhere in 2019, the foundation wanted to create an endowment fund which would provide a stable annual income. However, as donations had fallen so greatly in 2020, it was necessary to use some of the money intended for the endowment to cover expenses. Only a small fund could be established, but, Demirtshyan said, if there is no other way to cover the expenses of treatments, it will have to be spent too.

Meanwhile Kazanjian, acting president of the US board, said that the latter will carefully monitor how the money donated from the US is being spent.

Call for New Donations

Demirtshyan said that usually funding from the diaspora is based on events, though a small number of people have agreed to make direct monthly payments online. In normal times, more money comes from abroad than from Armenia. Though the absolute number of donors from Armenia is greater, Demirtshyan said that the sums given are larger by donors abroad.

Hayk

Though it is not possible to have the large banquets and events that were so successful in 2019, and Armenians throughout the world are fixated on the aftermath of the Artsakh war, Demitrtshyan said that new support is critical. “Given the situation, with Armenia exhausted financially, but cancer continuing to spread, we cannot wait till better times. We are reaching out to people saying that literally every single donation matters. Even ten dollars can buy something. It is very hard to see things that can be treated in kids that we have to leave untreated. We can save lives,” Demitshyan exclaimed.

If you wish to support the work of the City of Smile Foundation, please use this link to donate through GoFundMe: https://gf.me/u/zaa5qi.  For tax-free donations in the US, you can go to https://us-donate.cityofsmile.org/.

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