In quest to stave off symptoms amid insulin shortage, diabetics forced to improvise

AMMAN: Fifteen-year old Tala refuses to look at herself in the mirror.

She says she cannot bear to look at what she calls her “deformed” left eye, which lost its vision three months ago.

Tala has Type 1 diabetes, a chronic disease that occurs when the body cannot regulate blood sugar levels through the production of insulin, a hormone.   

Unlike Type 2 diabetics, who can be treated with oral medication, Type 1 requires daily premixed insulin shots, which are expensive and difficult to find in northern, opposition-controlled Syria, where Tala lives.

After her doctor informed the teenager that her right eye could also go blind, Tala started sleeping with the lights on, fearful that she will wake up one day to find her right eye visionless.                                                                                       

“I’m afraid of the dark now, because I’m worried I’ll lose my vision without realizing it,” she says.

Tala went blind in her left eye because she cannot regularly take the type of insulin required to regulate her glucose levels.

Since she cannot readily access or afford premixed insulin, Tala, along with thousands of other Type 1 diabetics in Idlib, often uses a cheaper alternative—short-acting insulin. This type of insulin decreases the level of sugar in the blood, but, unlike premixed insulin, does not stabilize it. By the time it arrives to Tala, the insulin is often expired or improperly refrigerated.

For insulin-dependent residents, short-acting insulin alone does not adequately control the glucose levels in their blood. As a result, they are at greater risk for blindness, kidney failure, heart attacks, stroke and lower limb amputation. Tala experiences sharp and irregular changes in her blood sugar, which is likely what led to retinal damage.

 “Wake me up when the war ends,” by Farah Ali. Photo courtesy of The Creative Memory of the Syrian Revolution.

Despite the risks, the use of short-acting insulin is “widespread throughout Idlib province,” Ayman al-Yousef, an official with the Idlib Health Directorate responsible for distributing medicine to pharmacies and warehouses, told Syria Direct.

“It is extremely difficult to obtain premixed insulin, and, given this war, vials are very expensive for residents. Sometimes, patients used expired, short-acting insulin as an alternative,” said Ayman Jabas, who is the director of the Medical District in Kafar Takharim, the northwest Idlib town where Tala lives.

Tala is one of an estimated 400,000 insulin-dependent diabetics living in Syria, 60 percent of whom risk medical complications because of an insulin shortage in the entire country, the World Health Organization (WHO) reported last March.

In northern, opposition-ruled Idlib province, where Tala lives, Type 1 diabetics have faced an “acute insulin shortage” since insulin deliveries to the province stopped in 2015, health officials and doctors in the northern territory told Syria Direct. The only free source of insulin for Idlib diabetics was donated by the Syrian American Medical Society (SAMS), which suspended deliveries in December 2015 due to insufficient funding.

Low supply, high demand

Before the war, locally produced insulin was free for all registered users of the government-run National Diabetes Program. In 2014, however, Syria’s sole insulin producer, Asia Pharmaceutical Industries (API), shut down after clashes between the regime and opposition forces in the west Aleppo countryside damaged the facility. The rebel-held town of Kafr Hamra, where API is located, continues to experience regular shelling since it borders regime territory.                              

With no operating insulin factory in Syria, diabetics in both regime and rebel areas rely on insulin deliveries from outside organizations, or purchase imported insulin, a monthly supply of which can cost up to $40 a month in opposition-controlled Idlib province, Syria Deeply reported in August. This is almost double the average monthly salary in the north.

Tala needs three injections of premixed insulin daily. Her father, Mustafa, a carpenter, earns between $20 and $30 a month, while treatment costs $40 a month, depending on insulin prices.

“What pains me is the fact that if medicine weren’t so expensive, I could have easily received treatment and controlled my symptoms,” says Tala, whose father is taking out loans to buy her insulin.

Premixed insulin used to cost SP550 ($2.50) a vial before the war. Now, a single insulin ampoule can sell for SP3,000 ($13.95), Syria Direct’s partner website the Syrian Voice reported last August.

Short-term solution

Dr. Ahmed, an endocrinologist in Kafar Takharim who treats Tala, says he fully understands that short-acting insulin is not a suitable alternative to premixed insulin.

“Short-acting insulin is usually given in emergency situations,” Dr. Ahmed says. It reaches the blood stream after 30 minutes and only lasts for four hours, he added.

Failing to administer short-acting insulin within the required time frame, or using expired, short-acting insulin which is only effective for an hour, leads to instability in the blood sugar level of diabetics.

This, said Dr. Ahmed, is the reason Tala went blind in one eye.

“The sudden and irregular rise and fall of sugar levels in the blood, especially when it occurs more than once a day, causes damage to the retina,” said the endocrinologist.

When Tala’s father cannot purchase premixed insulin, Dr. Ahmed provides Tala with the short-acting version, which he obtains from relatives in Turkey. He also has leftover insulin vials from SAMS’s last aid delivery in 2015, which are now expired.

Not all Idlib residents, however, can rely on their doctors for short-acting insulin.

Since Dr. Ahmed’s supply is limited, he can only give Tala three injections of short-acting insulin a day, which he administers every six hours, even though it only lasts for four. 

“I can’t give Tala short-acting insulin all of the time because I have a limited amount of ampoules. She is one of many diabetes patients,” said the doctor.

Because short-acting insulin is a temporary fix that does not maintain blood sugar levels in the long run, “other diabetes patients are getting worse because of the lack of premixed insulin,” said Dr. Ahmed.

‘Not enough funds’

In 2015, the Syrian American Medical Society (SAMS) distributed rapid, normal and pre-mixed insulin to four medical points in Idlib province.

“Unfortunately we are not currently receiving enough funds to procure the insulin,” Bachir Tajaldin, the Senior Program Manager in SAMS’s office in Turkey, told Syria Direct.

Tajaldin said that SAMS is looking for funding to resume insulin deliveries to northern Syria in the future.

Until then, thousands of diabetics in Idlib are responsible for finding their own insulin, paying exorbitant prices for smuggled insulin or requesting that family members send it from Turkey. 

Despite its high cost, the insulin Mustafa and other Idlib residents purchase from smugglers or traders is not as reliable or effective as insulin provided by aid organizations that are careful to maintain the cold chain refrigeration during shipping.

“Insulin from traders hasn’t been safely transported,” said Idlib health official al-Yousef.

‘Why is this happening?’

Without premixed insulin injections to ease her symptoms, Tala says she worries that they will worsen.  

“I don’t know when my symptoms will stop getting worse or which other organs will be affected,” she says.

Her parents pulled her out of school last year because premixed insulin shots are not always available and they worry that, without their supervision, she will eat sugary foods. Once, the teenager snuck a piece of bread and candy during class and fainted.

“They’re worried that one day, I’ll faint without anyone noticing,” she says.

At home, Tala’s mother locks the refrigerator door to prevent Tala from consuming foods that will cause a spike in her blood sugar.

Vision loss and diet changes are not the only ways diabetes affects Tala’s life. Her illness causes heavy bleeding and bloating during her menstrual cycle. She is kept up at night by constant trips to the bathroom.

Tala says that she has lost her childhood. She says that she wants to sleep at night, study in school, eat candy and see her friends look at her without pity. She says she wants to look into the mirror at her “hazel eyes” and smile, like she used to.

“Why is this happening to me?” asks the fifteen-year-old.

“This disease is destroying my body.”