BEIRUT: Mohammad Twieh, an 18-year-old resident of Nahr al-Bared refugee camp, was told as a child he would not survive to adulthood without a liver transplant by 2007.
Five years later he is still scrambling to fund the beyond-urgent operation.For anyone, a diagnosis of cancer, heart disease or multiple sclerosis is devastating news. But for Palestinian refugees living in Lebanon, with no means to pay for costly medical care or surgeries, families often have no choice but to watch their loved ones slowly succumb to the disease without treatment.
In their wildest dreams Mohammad’s family cannot afford the $95,000 fee for the liver transplant surgery. Mohammad, who has suffered from idiopathic liver cirrhosis since birth, is the youngest of eight children. His father is a seasonal laborer and his siblings are married with their own families to support.
To help ease the financial burden for patients like Mohammad, UNRWA launched the Catastrophic Ailment Relief (CARE) program in 2011 to help fund Palestinians who need tertiary medical care.
The program provides support through special appeals for funding as well as offering various levels of subsidies for those diagnosed with severe diseases such as cancer, multiple sclerosis, thalassemia and sickle cell anemia.
“To be afflicted with illness is something very, very heartbreaking for anyone in the world. But imagine the life of someone who is afflicted by such an illness who is poor, who cannot afford the treatment,” says Hoda Samra, who serves as the UNRWA information officer for the CARE program.
“Their family members just have to watch the person fade away, unable to do anything for them. This is the most terrible thing that could happen to anybody, in addition to the poverty.”
According to UNRWA, 95 percent of Palestinians in Lebanon do not have any health insurance and Palestinians are also ineligible to access coverage or subsidized medication from the Public Health Ministry.
Employment opportunities for Palestinians are severely limited due to Lebanon’s labor laws. Samra estimates that for those able to find work – which is often seasonal and precarious – a family will on average earn only $200-$300 in a month.
“Families have to pay for everything from this wage: food, non-food items, electricity, water, etc. The list is long. You can imagine that medications fall down to the bottom of the line,” she says.
While UNRWA’s primary and secondary health programs do give some financial assistance for severe diseases, the CARE program is able to extend funding and cover certain medications up to 80 percent.
For instance, UNRWA supports cancer patients, who incur about $25,000 of expenses annually, with $8,000 per year. With the CARE program they have been able to give an additional $4,000 of support to patients and increase funding for radiotherapy by $1500 per course of treatment.
The CARE program also covers 80 percent of the cost of medications for Palestinians with multiple sclerosis, which can total LL2,000,000 per month. Even so, Samra says, there are cases where families cannot come up with the remaining 20 percent.
“Unfortunately, the resources of UNRWA are limited and the whole budget for all of the Palestinian patients in Lebanon would not be enough to cover all of these [catastrophic] cases. We have had to prioritize these needs,” she continues.
The challenge is to secure sustainable, long-term funding so that the program can offer consistent treatments. At the moment, there is no specific funding for patients suffering from kidney failure, liver hepatitis B or C, rheumatologic diseases or for psychiatric drugs.
“Many of these patients, if not all, need treatment for their whole lives. This is where the complication comes, and how UNRWA cannot start something new that we will not know whether we will be able to sustain,” Samra says.
The CARE program provided financial assistance to 200 patients in 2011. But this is the tip of the iceberg, according to Samra, who estimates there are some 4,000 patients eligible and in need of assistance from the program.
While the program accepts donations year round, one way of prioritizing need has been for CARE to launch a Ramadan appeal in August and September, during which they seek sponsorship for a handful of urgent cases.
Mohammad’s is one of four cases this year, along with two girls under the age of 5 who require cardiac surgeries and a 23-year-old woman in need of a bone marrow transplant. Last year, UNRWA was able to secure full sponsorship for four of five cases in the 2011 appeal.
For Mohammad, funding cannot come soon enough. In August, doctors at AUB Medical Center, where Mohammad has been admitted three times this year for urgent procedures, found that the veins accessing the liver are almost completely clogged.
“I need to speed up the operation because seven months ago, the situation wasn’t as bad. It’s deteriorating quickly,” Mohammad says. “This could kill me.”
Mohammad’s older brother has already been identified as a suitable donor, but the family cannot schedule the operation until funding is secure.
Despite his worst fears, Mohammad remains hopeful that the appeal will raise the funds for his surgery and is forging ahead with his desire to study civil engineering at university.
But because of his medical situation, he was unable to sit for the official exams and UNRWA is trying to appeal to the Education Ministry to waive the tests or arrange another chance for Mohammad to take them.
“Given the situation of Palestinian people in Lebanon, education is our only weapon. Because of my illness, I know I need to depend on myself and continue my education.”
The special appeal for funding is open until Sept. 30. For more information or to donate visit www.unrwa.org/care or contact UNRWA at 01-840-490 ext 316 or 227.