Point/Counterpoint on Samahope: Leila Janah’s Response

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).

For:

  • 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.

Against:

  • 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.

14 thoughts on “Point/Counterpoint on Samahope: Leila Janah’s Response

  1. I think the only valid reaction to Leila’s response – is “well said”. I think a lot of points you make on wronging rights are correct and important to make a fuss about – but in this case, I 100% agree with Leila. The one issue I have with your arguments is you are not development practitioners and, as far as I’m aware you don’t work or have long-term experience overseas. That said your arguments, while they are always well written and usually hilarious – can often come across as less “complex” and more on the side of white, middle-class, PC simplicity and also, at times repetitive (your argument on the word rape is both valid/right and wrong…I don’t think the complexity of the issue comes through though). Also – I take it you don’t have kids? Having children is a huge undertaking and the idea of dying in childbirth or suffering from easily fixable problems like Fistula (which, as Leila rightly points out comes in hand with being stigmatized and excluded for women who as it is have no options) doesn’t bear thinking about – let alone simply recovering from a “standard” procedure like a C-section (I’ve had 4 – all emergency) in a country with no health care, extreme poverty, little access to clean water, etc etc.

    I have read all your arguments – but I think in this case your concern was misplaced and clearly Leila is as aware, if not more, of the issues you raise.

  2. Of all the international help/aid blog conversations I’ve seen, this is the most respectful and informative. Thanks Amanda and Kate and Leila for this.

    Leila, I appreciate how thoughtful you’ve been about this, but what I see missing from your argument is how the individual info on the website affects a woman’s personal dignity. As you note, they are already stigmatized. That seems to me to be an argument to be more careful about how to elevate their dignity, then to be more lenient about it.

    I like actions not more arguments so here’s my suggestion: what if you made some changes to the approach (showed the woman as having had success, take off the younger people, share sensitive info to donors one-on-one rather than on a public website) and then widely broadcast that you made these choices and why you did it? Use it as an opportunity to both promote your NGO and promote what good donating should be. Message yourselves as people who want to help the women physically but also respect them psychologically. Executed correctly, this could get you more attention/funding than before.

    • Thank you, Brigid, for summing up my discomfort with this otherwise well-stated response: “what I see missing from your argument is how the individual info on the website affects a woman’s personal dignity.”

      I wish all the best to Leila’s mission. I just hope the group can find a way to rework its fundraising a little.

  3. You say that many women want to share there personal information in order to raise awareness and encourage other women with fistulas to come forward. Why can’t you show the photos and personal information only of adult women who want to share that information? Surely you’d have enough volunteers to fill your website without having to require women and girls in a vulnerable situation to disclose their private information to the entire internet.

  4. I am sorry to inject a negative voice into this debate. I find the Samahope website to be unethical, distasteful and possibly very destructive to the lives of the women it purports to be helping.

    There are two main issues. First, these women are very unlikely to be giving what we would recognize as informed consent for the use of their images and the publication of their private medical information. Many of these women are recruited to come to the surgical center from remote and rural areas of the country. They likely cannot read (and certainly not in English, by your own admission), they have probably have never used the internet, and I doubt very much that they understand what it means for their photos and the details of their medical problems to be posted online. It is therefore not ethical to use their images or medical histories on the Samahope website. (Are you certain that they do not believe that receiving the surgery is not contingent on giving you consent to post their images and stories? If so, how are you certain?)

    Second is the issue of children. It is not good enough to throw up your hands and say that because there are cultural differences in what ages are considered youth, it is acceptable to post the photograph and the medical history of a teenager with a stigmatizing illness on a website. Nor is it acceptable to say that because the women do not know their own exact ages, you can just ignore the fact that they are teenagers. If a girl says that she is 15 years old, then you must assume that she is. And therefore it is unethical to publicize her medical traumas on the internet.

    (As an aside, and one of the things that upset me the most about this website, is that many of the photos from the site are the women in their hospital gowns, and some are photos of women lying in bed, in what looks to be pain. If you wouldn’t want photos of your own mother or sister in that position posted online, please do not post similar images of poor African women.)

    This debate reminds me of similar debates about journalists who publicize the names and photos of African child rape victims (which is equally distasteful). There simply must be universal standards for how researchers of various types, medical professionals, journalists and advocates treat vulnerable populations. If something is not acceptable in the U.S. context, it is not acceptable in Sierra Leone context. Period.

    There are better, more ethical and more respectful ways to raise money for women with obstetric fistula. I applaud your efforts to draw attention to this issue and to attract funds to this cause. But a Kiva-style website for desperate people’s surgeries is a terrible and exploitative idea. I sincerely hope that you make major changes to this site very soon.

    • While the above writer, who chose to remain anonymous, offers insights which have degrees of validity, his/her conclusions, that the site is unethical and destructive, are harsh and inaccurate. I join this debate, having given Leila a couple of suggestions privately, because I feel compelled to come to the defense of the site after reading the last post.

      While it may be true that the women depicted may not initially comprehend fully the internet and its coverage, it seems to me that the ability to obtain a life-changing operation would outweigh any potential negative effects from having their picture shown on a charity’s web site. It certainly is possible to explain the implications of having their pictures on the web, and the writer’s assumption their consent could not be informed is somewhat patronizing.

      That some of the women on the site may be younger than the writer would prefer overlooks the fact that in some cultures, including that of Sierra Leone, women marry and get pregnant at very young ages. This is not an easy call, but again the chance at what we might call a normal life far outweighs the potential stigma of having their condition posted, especially considering that they are already heavily stigmatized by having the condition itself.

      The site may need some tweaking, but I disagree that it needs major changes.

      • First of all, I would like to say that I really appreciate the discussion on Samahope because it gives me so much insight into pros and cons regarding the “new” ways of funding.

        Referring to “Grossed out”‘s statement that
        “There simply must be universal standards for how researchers of various types, medical professionals, journalists and advocates treat vulnerable populations. If something is not acceptable in the U.S. context, it is not acceptable in Sierra Leone context. Period.”:

        I understand your line of thought. But the way your argument is put, it comes very much across as “U.S. standards are universal standards, who cares what they think in Sierra Leone.”

  5. There’s plenty evidence to suggest Samahope’s tactics are brilliant. Such a strong direct donor-beneficiary link must get the cash rolling. But at what cost?

    I’ve blogged before on the way all aid seems dependent on humans being hardwired to feel good about giving (http://www.humanicontrarian.com/2012/04/13/model-business/). But how low will the aid industry go to play on heartstrings?

    In this case, I agree with Grossed Out’s comments. I can’t understand anybody who justifies Samahope’s approach by suggesting there are no alternatives — forcing a false justaposition between this fundraising tactic and letting these women urinate all over themselves for the rest of their lives. As for informed consent, this is simple coercion. Say yes and Samahope will fix your vagina; say no and go back to your misery. With saviors like this, who needs enemies?

    In addition to the general exploitation of these women, I wonder what medical ethics says about the practice. What about ensuring that surgery is delivered on the basis of need, not on the basis of who can pay or, worse still, who can attract the most donors. I’d be very curious to see an analysis of results. My suspicion? It comes down to the photo, and one could almost predict who will win this surgical sweepstakes.

  6. One thing missing from this discussion is the fact that there is almost no internet access in rural Sierra Leone thus the chances of anyone seeing and recognizing any of these women is tiny. While this doesn’t overcome an ethical argument and all good aid should constantly wrestle with ethical issues, it does mean that these specific women who may get their fistulas repaired are almost guaranteed never to encounter anyone who has seen their information on the internet. Imagine a similar website reversed, written only in Russian where rural Russians could support white American sexual abuse victims. Same issues regarding ethics but also same likelihood that almost no one in rural Russia who frequented a Russian language site and donated would ever see any of the Americans in question.

    In rural Sierra Leone, your chances of being outed by family, chiefs, police, or national staff of NGOs or INGOs is infinitely higher for women suffering from a fistula- let alone that it tends to be a rather self-identifying medical condition- than posting information on an American website written totally in English ever would be. Ethics are important and we should constantly strive to be as ethical as possible in aid work but for these women, they’re sharing information with people who will never see them and receiving life-saving or life-changing surgery in response. It’s a deal women struggling with such a devastating condition almost anywhere in the world would accept.

  7. Funny to watch people spend so much time debating and writing their opinions….and so little time actually DOING something: Donating. Volunteering. Creating. Dreaming.

    Kudos to people who DO something instead of spending their time trying to unravel the good things that are happening around them.

  8. I am surprised that Leila sited a lack of time as a reason (excuse?) for not gathering the information to provide fuller descriptions of the women. Is a couple minutes really too much? Is it really asking too much to add another question or two to the line of, “What is your name? What is your age? What is the nature of your fistula?”

    I’m also underwhelmed by the response to the issue of showing pictures of young girls. It’s true that there’s not a global definition of “underage,” and I believe that many people in Sierra Leone don’t know their exact age. But saying “Well, we don’t know how old they are or when adulthood starts here!” is not at all a reason to treat everyone like their adults. Some common sense could be applied to determine who is old enough to give informed consent.

    Lastly, I enormously agree with Brigid’s comment that the fact that these women are already stigmatized is a reason to be more careful about their dignity, not more lenient about it. Well said.

  9. Pingback: Co-founder of Samahope, Leila Janah’s point-counterpoint discussion | samaWP

  10. Pingback: Co-founder of Samahope, Leila Janah’s point-counterpoint discussion - samaWP

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