AECP Electronic Bulletin - 2010 H2

Volume 5 - # 2

electronic bulletin The Program of Retinopathy of Prematurity Launched Successfully in Armenia

All premature infants born in Armenia onwards undergo regular eye screenings and treatment against the eye disease of Retinopathy of Prematurity (ROP). This was made possible through the efforts of the Armenian EyeCare Project (AECP) and its partners. There are now well-trained experts and necessary equipment available in Armenia.

The Armenian EyeCare Project (AECP) has been fighting against different eye diseases in our country for almost two decades. For this very purpose, several important ophthalmologic departments were established at the AECP partnering eye clinics during that time. The AECP medical missions traditionally visit Armenia every year to support the sustainability development and capacity building of those departments. Each medical mission is concentrated around a specific eye disorder, enabling the fully fledged diagnostics, prevention, and treatment of that particular disease.

Through joint activities, the AECP and its partners have greatly contributed to Armenia’s image of an advanced ophthalmologic center in the region. Modern ophthalmologic services allow fighting against almost all types of eye diseases and disorders in our country, in compliance with highest international standards.

Nonetheless, there are still several eye diseases in Armenia that require serious actions to be taken and relevant information to be shared with the Armenian doctors and general population. Retinopathy of Prematurity (ROP) is one of those diseases. It affects the blood vessels in

sight

the back of the eye and threatens the infant to go blind because of retinal detachment. The risk group for ROP is defined among infants born with a birth weight of less than 1500 g or with a gestational age of 30 weeks or less.

Well before starting a program the AECP management had researched the tendencies of the ROP in our country.

The problem of ROP was emerging, as evidenced by the practicing Armenian neonatologists and ophthalmologists who encountered more and more of such cases.

Annually, around 500-600 infants belonging to that risk group were born, and this number was on an increasing curve. The ROP screening, early detection, and treatment were not available in Armenia. As a result, the vision problems of these children were revealed too late, making treatment less effective or useful at all. Aside from that, children with ROP had no option but to go abroad to receive treatment.

All mentioned factors assured the AECP and its partners that a special ROP program should be launched and a respective medical mission to Armenia should be organized. The results of the 36th AECP medical mission continued on page 2 >>>

IN THIS ISSUE The Program of Retinopathy of Prematurity Launched Successfully in Armenia.

Prestigious Award ReCEIVED

Swiss Foundation Sponsoring GEBAUER STIFTUNG

Gift of the sight

bringing

to armenian eyes the armenian eyecare project aygestan 5, house 7 yerevan, armenia phone (374 10) 55 90 68 fax (374 10) 57 76 94 aecp@cornet.am

p.o. box 5630 newport beach, ca 92662 phone 949.675.5767 fax 949 673.2356 aecp@eyecareproject.com

Founded in 1992, in the United States by an American-Armenian ophthalmologist Roger Ohanesian, M.D., the Armenian EyeCare Project (AECP) is a California based nonprofit corporation dedicated to the elimination of preventable blindness in Armenia. In 2003, the AECP established an office in Yerevan and launched its program “Bringing Sight to Armenian Eyes.” The Initiative has five comprehensive, integrated components developed to eliminate preventable blindness. They include direct patient care, medical education and training, public education, research and capacity building.

More than 265,000 people have been screened and over 11,000 sight-saving surgeries and laser trea ments have been performed in the Mobile Eye Hospital. The AECP has been a USAID partner since 2004.

www.eyecareproject.com

This publication was made possible with the support of the American People through the U.S. Agency for International Development (USAID) and the Armenian EyeCare Project (AECP).

The contents of this publication are the sole responsibility of the authors and do not necessarily reflect the views of USAID or the U.S. Government.

2 AECP ELECTRONIC BULLETIN – VOLUME FIVE/ISSUE TWO

<<< started on page 1

showed that AECP’s initiative was well-timed, and more importantly, necessary for Armenia.

At a meeting of the Academy of Ophthalmology in New York, the AECP President, Roger Ohanesian, MD, approached doctors considered the top world specialists in the field and suggested that they join his team on a mission to Yerevan.

Through persistent follow up and planning, the AECP was able to put together a robust team of professionals who made the core of the ROP program in Armenia. Doctor Ohanesian, along with Dr. Thomas Lee, Director of the Retina Institute of the Vision Center at Children’s Hospital in Los Angeles; Dr. Paul Chan, Director of Retina Service at Weill Cornell Medical College; and Dr. James E. Smith, recognized as a world-leader in ROP treatment from Australia, came to Armenia on a regular medical mission.

The doctors (as all the AECP associates) travelled to Armenia at their own expense and volunteered a week of lectures and consultations.

AECP 36th Medical Mission

Dr. Paul Chan, Dr. James Smith, Dr. Roger Ohanesian, Mrs. Leslie Mackeen, Dr. Thomas Lee

The International Conference "Prevention of Retinopathy of Prematurity in Armenia"

The motto of the conference running on June 28-29 in Yerevan was “Don’t let her first sight be her last. Eliminate infantile blindness.” This event, organized in collaboration with the RA Ministry of Health and the USAID, gathered more than 250 participants, mainly ophthalmologists and neonatologists from Yerevan and Armenian regions.

The RA Deputy Minister of Health, Dr. Tatul Hakobyan, the Chairman of the RA National Assembly Standing Committee on Health Care, Maternity and Childhood, Dr. Ara Babloyan, the Acting Deputy Chief of the U.S. Embassy in Armenia John Maher and AECP President Dr. Roger Ohanesian opened the conference. It launched the main stage of AECP’s Screening, Diagnostics, and Treatment Program of Retinopathy of Prematurity (ROP) in Armenia, being now implemented in all Neonatal Intensive Care Units (NICUs) in Yerevan. The RA Ministry of Health approved a respective protocol in this regard.

The AECP Country Director Nune Yeghiazaryan came up with a special presentation, justifying the need of the ROP program in Armenia. Mrs. Yeghiazaryan estimated that the introduction of the ROP program in Armenia would help save about 100 children from blindness each year, and would allow the Armenian government to save 127,3 million drams (~344,000 USD). The program’s total annual cost has been estimated at 22,7 million drams (~61,350 USD), while the AECP has already invested more than 200,000 USD into the program in the form of capital expenditures, equipment, and training for a specialist in the United States. It

is envisioned that the costs in the upcoming years of the program will be provided by the AECP with the support of international donors. It is expected that program’s finances will be partially covered from the Armenian state budget starting 2012.

“The conference was unprecedented by its professional significance” many respondents said while being interviewed. The presentations and case studies delivered by Doctors Thomas Lee, Paul Chan, and James Smith related to the history of the disease, its diagnosis and advanced methods of treatment. The presentations by the RA Chief Neonatologist, Dr. Hrant Kalenteryan and Head of the Pediatric Department of Malayan Eye Center, Dr. Ruzanna Harutyunyan, concentrated on the Armenian realities of the ROP. This was very useful in one line with the information provided by their foreign colleagues.

Mrs. Leslie Mackeen, a special expert invited to Armenia from the U.S., gave an overview on the use of the Retinal Cameras (RetCams), purchased by the AECP and imported to Armenia specifically for the ROP program.

The conference equipped its participants with theoretical knowledge, which required further reinforcement through practical work. For this purpose, the U.S. experts conducted special trainings for the Armenian specialists on screening of premature infants, ROP detection, laser treatment and implementation of advanced equipment in several NICUs of Yerevan.

For the ROP program the AECP has imported two Retinal Cameras (RetCams) to Armenia, donated by California AECP supporter Luther Khachigian. They are the first of the kind in Armenia. The first camera is permanently located at the University No: 1 Clinic of Yerevan. The second one is portable and is used by the screeners during their visits to other NICUs. When not at the NICUs, the portable RetCam is located at the Malayan Eye Center. The U.S. expert Mrs. Leslie Mackeen delivered special trainings for both of the devices.

AECP ELECTRONIC BULLETIN – VOLUME FIVE/ISSUE TWO 3

Trainings that turned into a sight-saving struggle

Hakob is the very first baby that the physicians of the AECP medical mission identified at an extremely dangerous stage of ROP. Much to their surprise and shock, the AECP physicians found that he had “Plus Disease” – an abnormality of the retinal veins.

Nonetheless, that was the “lucky” day for a fiftyday-old Hakob and his mother Maqruhi. Nobody would have expected that world class ROP experts would appear in Armenia, in the Republican Neonatal Intensive Care Unit (NICU), on that specific day.

The AECP doctors didn’t, however, expect their training to take on the dramatic significance that was found here.

When examining Hakob, Dr. James Smith pulled Dr. Roger Ohanesian, the AECP president, aside.

“This baby will be blind in a week if not operated on immediately,” he said. They continued examining premature infants. Another case was found. Then another. And finally four cases. The doctors were stunned.

“These doctors might go an entire career and only see a few cases of this severity of ROP,” Dr. Ohanesian said. “To find four cases in only one neonatal unit is extraordinary.”

The ad-hoc laser treatment arranged for Hakob lasted until 3:00 am in the morning. The AECP doctors and their Armenian colleagues worked with devotion and left the NICU only after they completed their job.

After each laser session, the doctors looked through the RetCam and registered their progress step by step. The Republican NICU’s staff had never seen saw such a representative group of ophthalmologists in their premises.

Maqruhi, Hakob’s mother, told us about her feelings, experienced during that dramatic evening: ‘’When I saw that many doctors working around my baby, honestly, I felt fear of losing him. It was just the same feeling when initially the doctors told

me that they would hardly manage to save my boy right after his birth fifty days earlier.’’

Maqruhi lost her first baby ten years ago, and she was unable to conceive since then. As she told us, Hakob is very precious for her family, and she felt “a divine touch” when Armenian neonatologists brought her boy back to life. At first she was very hesitant in giving her consent to her boy’s laser surgery. “ I said - I would prefer to have a blind child, rather than to lose him” Maqruhi told us about her first conversation with the NICU staff and the AECP. This was her first reaction when they told her about Hakob’s diagnosis.

“Just imagine, a crowd of doctors busy around my kid, switched through numerous wires to incredible machines. Moreover, they tell me that he will go blind if not operated immediately. It was terrible, and I was in panic” she said.

The mother confessed that she calmed down only after Dr. Thomas Lee approached her and explained in details all possible consequences of the disease for Hakob, if not operated immediately. “I really trusted them, because they seemed very experienced people. Finally, I understood that no matter what I feel, I am not a specialist and I may make a mistake. I will never forgive myself, if my child goes blind because of my mistake.” she said.

The feelings and emotions of Hakob’s mother were quite expected for the AECP staff. ROP is an unexplored and unknown disease for many Armenians, and it is really hard to assure the parents of prematurely born infants that their baby needs a surgery in that early age. The parents need a great deal of courage to let the doctors approach to their baby weighting less than a kilo and fighting hardly for life.

Hakob’s story is just a sample evidence upon how big is the job that needs to be done in Armenia in raising the awareness and educating the public

Dr. Thomas Lee showed step by step to his Armenian colleague, Dr. Tadevos Hovhanisyan how to operate the newly acquired laser-ophthalmoscope. This laser, brought to Armenia by the AECP with the contribution of the Burns Committee, is a critical instrument for treating ROP. Dr. Tadevos Hovhanesyan is a skilled retinal surgeon, for whom Hakob’s treatment was the first chance to learn how to use that laser for infants. on ROP. The AECP’s ROP program in Armenia is a unique initiative by itself. The Armenian EyeCare Project concentrates its efforts and resources for the upcoming years towards establishing sufficient country-wide national system to combat ROP in Armenia.

Hakob feels good now and his mother is full of confidence that everything will be fine for her only child. In a couple of months the baby will undergo new checkups at the Malayan Eye Center (MOC).

The Center has now all the necessary equipment and expertise. Apart from the advanced equipment, there are professionally trained Armenian doctors who are in permanent contact with their American colleague through the innovative channels of telemedicine established by the AECP.

Prestigious Award Received "The Armenian EyeCare Project" documentary wins the prestigious CINE Golden Eagle Award The Armenian EyeCare Project (AECP) and Art Simon Productions are pleased to announce that the “The Armenian EyeCare Project” documentary has won the prestigious CINE Golden Eagle Award, which has been widely recognized as a symbol of excellence in professional and independent filmmaking for over 50 years. The AECP Documentary was Produced and Directed by Art Simon of Art Simon Productions and was awarded the CINE Golden Eagle for the Spring, 2010 competition, one of two competitions conducted by CINE each year.

Winners of the CINE competitions are chosen through a rigorous, tiered jury system, based on criteria reflecting storytelling, production value, artistry, purpose and overall excellence. The award ceremony took place on June 3 in Washington D.C. Since its foundation in 1957, CINE has been dedicated to discovering, rewarding, educating, and supporting established and emerging talent in film and video. Among great talents whose first films were awarded CINE Golden Eagles are Steven Spielberg, Ken Burns and Ron Howard, and filmmakers such as Robert Zemeckis, Mike Nichols, Martin Scorcese, Mira Nair, Charles Guggenheim, Stanley Nelson, Albert Maysles, Frederick Wiseman have also been recipients of the Golden Eagle Award.

“The Armenian EyeCare Project” documentary has been recognized by CINE as the best under the category of Motivational films, aiming at inspiring

people to take action. The documentary joined the archive of CINE winners, which can be found at www.cine.org. .

“The Armenian EyeCare Project” documentary tells about the overall operations of the AECP, including stories about AECP medical missions arriving in Armenia and the work of the AECP and its counterparts in providing quality eye care to Armenian people. More importantly, the film presents thrilling patient stories with people, treated by the AECP, telling the audiences about the changes they experience after the sight-saving surgeries and treatment.

“When it came time to edit this film, I had over 60 hours of footage, which I had to cut down to about ten minutes. Editing this film was one of the most difficult editing jobs that I’ve done. Not in a technical sense, but because of my emotional connection to the subjects and their stories,” said Art Simon, the producer of the film.

4 AECP ELECTRONIC BULLETIN – VOLUME FIVE/ISSUE TWO

SWISS FOUNDATION SPONSORING MISSIONS IN VAYOTS DZOR AND SYUNIK The Armenian EyeCare Project has been honored with an award of a 50,000 $ grant from the Gebauer Stiftung, Switzerland, in 2009. Thanks to this generous support activities were carried out by AECP medical groups and the Mobile Eye Hospital (MEH) in the marzes (provinces) of Vayots Dzor and Syunik, Armenia. Gebauer Stiftung is now listed among the Silver Sponsors of the AECP.

RESULTS

GEBAUER STIFTUNG

Marz

Screened adults

Screened children

Children identified Children identified with eye with eye problems problems for the first time

Examined on the MEH

Lasers on the Surgeries on MEH the MEH

Eyeglasses

Vayots Dzor

2050

2454

416

240

288

14

76

409

Syunik

2394

3591

679

495

500

61

135

1093

Total

4444

6045

1095

735

788

75

211

1502

This was the first ever grant to an Armenian organization provided by the Gebuer Stiftung. With the help of the grant the AECP reached impressive results (please, see the chart).

AECP field mission to Vayots Dzor took place from April 5- 30. AECP medical groups visited 21communities (3 urban and 18 rural), 22 schools and 2 kindergartens. The Mobile Eye Hospital was stationed in the cities of Yegheghnadzor and Jermuk.

The field mission to the Syunik marz took place from May 6 to June 7. AECP medical groups visited 27 communities (including 6 urban and 21 rural) and 21 schools. The Mobile Eye Hospital was stationed in the cities of Kapan, Goris and Sisian.

Local ophthalmologists from Yeghegnadzor and Vayk (Vayots Dzor) and Sisian and Kajaran (Syunik) were part of the screening as on –job training.

Their involvement in the screening program as well as on the MEH has increased the knowledge and capacity of the local ophthalmic service.

The AECP prepared public education trainers from the representatives of local non-governmental organizations, family doctors and ophthalmologists in Goris. They will incorporate the eyecare information in their general information and continue delivering sessions for targeted population

at the community level.

During the implementation of the AECP program in Vayots Dzor and Syunik Mrs. Mariam Eugster, who partners with the representatives of the Gebauer Stiftung, visited Armenia. Mrs. Eugster was invited to visit the MEH, stationed in the town of Sisian (Syunik) at that particular moment.

Mrs. Mariam Eugster met with AECP medical staff, observed surgeries and eye examinations and talked to patients. Mrs. Nune Yeghiazaryan, AECP Country Director, made a tour of the MEH for Mrs. Eugster, as well as briefed her on AECP operations and activities. Mrs. Mariam Eugster shared with us her impressions after the trip to the MEH: “The first impression on the Armenian EyeCare Project is very positive. I saw with my own eyes what a serious work is being done. I saw people with their real stories and I saw the great impact the AECP and the support of Gebauer Stiftung has on their lives. I’m sure that by its mission and importance the AECP competes with any other organization. The most important thing here is the highest possible quality of the provided services and that of project management. You are the first Project in Armenia that Gebaur Stiftung has provided with a grant. I believe that the success-

ful completion of activities may raise more interest towards Armenia on the whole.”

According to Mrs. Nune Yeghiazaryan, for this particular program the AECP has chosen the provinces of Syunik and Vayots Dzor because of their remoteness from the capital and underdeveloped infrastructures. “Thanks to Gebauer Stiftung, we were able not only to provide direct patient care to the adult population but also enlarge the prevention component and include children’s screening in the program. We mainly work with American donors and charity organizations, hence the cooperation with a Swiss organization is seen as a very honorable, responsible and promising endeavor.

This cooperation is very important for us and we hope that the successful completion of the project may open new avenues for us in the fulfillment of our mission – elimination of avoidable blindness in Armenia”.

Gift of the sight Together we will overcome ... The AECP doctors help another vulnerable Armenian family.

Fate doesn’t play favorites. For the Atabekyan family, however, generosity can. Two years ago, extreme poverty brought Masis and Loreta Atabekyan and their daughters Diana and Milena from Armenia’s southern Goris province to the suburb of Tairov, near Yerevan. They live in a rusty metal shack at the end of a dirt road, paying 20,000 drams [~$65 USD] per month in rent. “You can’t find anything cheaper,” says Loreta. Masis is the family’s sole breadwinner; all money earned through difficult construction jobs is spent on rent, food, and minimal essentials for the family. Like in many poor Armenian families, life for the Atabekyans is a dayto-day challenge to survive. However, two tragic episodes – and two inspiring recoveries – set this family apart.

In 2007, seven-year-old Diana received heavy burns in a firework accident at a school Christmas performance. “Everyone was screaming in horror as Diana’s white snowgirl dress was devoured by fire from the sparklers…my child was burning inside that flame,” Loreta recalls. “The fire burned through her dress to her body, leaving her skin horribly drooped. No one dared to approach her.”

Medical treatment was far beyond what the Atabekyans could afford. The incident was widely covered by Armenian and international media, and generous individuals came to Diana’s aid. Thanks to volunteers from Armenian communities in New

Jersey and Boston, Diana underwent three surgeries, including one at the Shriner’s Hospital in Boston. Further surgeries are planned for restoring her health.

The Atabekyans faced fate anew in summer of 2008: Masis fell several stairs after sustaining a 10,000-volt electricity shock at his construction site.

His many significant injuries included a traumatic cataract preventing any vision out of his left eye.

Unable to work as a result, Masis faced the sobering reality of unemployment, knowing that he would not be able to provide for his family.

Generous people again came to Atabekyans’ aid.

Upon the request of Laura Bilazarian Purutyan from Boston, the Armenian EyeCare Project provided the sight-saving surgery for Masis. It was performed

by AECP ophthalmologist Asatour Hovsepyan on January 26, 2010 at the Malayan Eye Center in Yerevan. The cataract was successfully removed, there were no complications, and vision was completely restored.

The day of Masis’ post-operative checkup and bandage removal was memorable. Loreta and five-year-old Milena eagerly asked Masis what he saw as he removed the patch. He was silent for a moment, then erupted in joyful exclamations and a wide grin. “I thought I would never see again, but now I see better than before!” Soon he was playing with Milena in the Malayan Eye Center garden. “We

are so thankful to all of you for this … I knew that together we could overcome…” Loreta said.

Masis is just one of thousands of Armenians whose lives have been changed by the Armenian EyeCare Project. By restoring vision, the Project provides hope – and very tangible second chances – to people like Masis. These stories energize AECP staff members, who know that patients’ restored sight often means restored livelihood and provision for their families. Indeed, tragedy may occur twice, but generosity is refreshingly unaware of its limitations.