We asked Samahope founder Leila Janah to share her reaction to our criticisms of the organization’s approach, and explain the importance of the work Samahope is doing. We very much appreciate her thoughtful response, and her willingness to acknowledge the difficulty of getting this sort of work right. For more on this debate, check out the Quora discussion on Samahope. Here are Leila’s thoughts:
I founded Samahope after running into a surgeon named Dr. Maggi, a retired Texan OB/GYN, on a trip to Sierra Leone with the State Department last year. I’d visited hoping to find a site for Samasource, but realized quickly that our model wouldn’t work in a country where 70% of the population is illiterate and there is almost no infrastructure. I also learned that one in eight women in Sierra Leone die in childbirth — the worst rate anywhere in the world. There is almost no acute care for mothers in Sierra Leone, and there are 50 surgeons in the entire country.
I realized I could apply my tech background to fixing another problem: raising money for clinics in poor places offering life-saving care to people beyond the reach of public hospitals. My friends at Kiva encouraged me to do this, and I set up samahope.org with two volunteers, Shawn Graft (a web developer) and Shivani Patel (a former McKinsey consultant and product manager).
The aim of the site is to fund life-changing medical treatments for people who can’t afford them.
On your first point, I hear you — we’d love to paint a fuller picture of each person, but we have very little time to gather the patient’s story in the field. If we spent more time doing this, our overhead costs would increase and donors would be less interested in funding surgeries. In the future, we’d love to create a way for patients to share their own stories through a more direct connection to the site, but right now, this is very difficult. Most patients do not have cell phones or speak English, and many do not speak the lingua franca of their country, so an in-person visit with multiple levels of translation is required to capture their stories.
With regard to the issue of possible coerced disclosure: Samahope actually works as a reimbursement method for partners who perform surgeries. Most partners offering these types of surgeries require any patient who receives a procedure to allow use of his or her photo and bio — this is true for the best-rated organization in this field, ReSurge (formerly Interplast; here’s a review on GiveWell). In an ideal world, surgeries would be funded through public health systems and no one would have to disclose personal information. In the real world, disclosure is necessary to both prevent fraud and prove that the operation was completed, and to raise money.
Exceptions are made if disclosure would compromise the safety of a patient.
Two other points are worth noting here: (1) Most patients who suffer from fistula or the most common conditions requiring reconstructive surgery are already stigmatized; and (2) When I interviewed 14 patients personally in August 2012, I found that most women wanted to share their condition to raise awareness and ensure that other women with fistulas would come forward.
As for your concern that the setup forces the potential recipients into competition, this is true, and it sucks. We don’t know how to solve for the fact that every person on the site is in need, and there is not a good way to distinguish each patient. One idea we had is to introduce a button to allow users to let Samahope allocate their donation (most likely we will choose the profile that has been on the site the longest, or to complete funding for a patient with a small amount remaining).
As we add more treatments or surgery types (for example, burn or cleft palate repair), this problem will get worse: how to choose among so many people with so much need? That said, this is a problem that every donor faces every time he or she gives, as there are billions of needy people who could all benefit from a gift. So in the worst case Samahope is transferring an existing problem that already exists in the field of giving to the web, but I don’t think we’re creating new problems.
Finally, I’ve heard arguments both for and against representing younger people on the site. I use the term “younger people” and not “underage” because there is little consensus as to what constitutes underage globally. Another complicating factor is that many of the young women on Samahope do not know their own ages or have any public record of their birth (I witnessed this personally in my recent visit to Sierra Leone).
- Treating someone younger results in more benefit, as more years of his or her life will be lived in better health. Public health experts and economists think in terms of “Quality-Adjusted Life-Years” — in other words, the number of years of life a person lives times the quality of that life (with a discount for medical conditions that make a person live sub-optimally). In QALYs, a young person receives more benefit than an older person from a given surgery, since she has more life to live.
- Young people heal faster, and may be more likely to receive a positive result from surgery.
- Young people are disproportionately affected by certain conditions for which reconstructive surgery is effective, such as burns and cleft palate. According to the World Health Organization, the vast majority (95%) of burn victims are in developing countries, and burns are in the top 15 causes of death for people aged 5-29.
- Young people are more vulnerable to exploitation and abuse if their information is made public without adequate protection.
- Young people may not fully understand the implications of publicizing their patient information, and may not be able to provide legal, informed consent.
- Child safety laws in some countries prohibit the display or collection of children’s information below a certain age (in the US, this is 13).
Bottom line: this is a very tough issue. I’ve had knee-jerk reactions to sites like Samahope in the past whenever they portray poor people as helpless victims and somehow different from you and me. But after spending ten years going back and forth to Africa and Asia and meeting a lot more people who can’t afford the basic necessities of life, I’ve found that the people portrayed on those sites don’t mind sharing their stories if that gives them access to the things they need. The magnitude of this problem is so great, and the amount of money spent to fix it so comparatively tiny, that the right thing to do is to try to raise more funds and direct them to the right clinics, even if our methods aren’t perfect.