Best of luck with the intervention!
One thing I would suggest is that since this is a genetic disease, once you have found a case - it is worth advising the family to get cousins/siblings tested as they are much more likely than the general population to have the disease. The first sickling crisis can be fatal so early diagnosis is really important.
This is sensible and we agree. We will take it into consideration.
Really interesting - thank you for sharing, can you please clarify how you find the families (and how the cost of this is factored into the thinking)?
As another commenter noted, I would be really interested in learning more about your perspective on 'just' using the money for treatment vs. a transfer.
Is a large proportion of the envisioned benefit coming from treating patients? If so, is there a risk with a direct cash transfer (vs. paying for treatment) that the monies are not used in the way you envision? I would be interested in learning more about how you dealt with this uncertainty
Thanks in advance for sharing this exciting idea.
Hi, the project is still very small, we found a charity that was already doing this and had identified the family, possibly because they were known to be in dire situation (begging) in their community. Other families have been identified through community mechanisms after.
In the future, we can work with health centers to reach to those who are accessing treatment with their consent, even if they are accessing intermittently. Targeting should not be expensive.
We generally don't see a problem with giving the cash and there would be additional complexity if we have to oversee the treatment process, but your concern is reasonable.
I hope this is useful
Hi, we have published a report of this intervention in GlobalGiving: Reports on Help children with sickle cell syndrome - GlobalGiving
There is a good post exploring sickle cell disease, here: [Cause Exploration Prizes] Sickle Cell Disease — EA Forum (effectivealtruism.org). This is a good starting point before reading this one.
Effective Help[1] is a small EA-inspired Cameroonian[2] organization trying to identify local cost-effective projects. We analysed data from 39 local projects and found one standing out, a small monthly cash transfer to families with a child or more suffering from sickle cell anaemia. We decided to partner with the NGO carrying out this project and raise funds for it.
We think this is a good way forward for us. Please go through our thinking below and tell us how to improve.
Questions:
Our position: We don’t think this is as cost-effective as some of the best causes globally, but we think it compares much better to other local NGOs in Cameroon and to other projects in crowdfunding sites, so we are comfortable raising more funds away from less cost-effective causes and towards this one. The worst that can happen is that we transfer funds to a poor family, at a slightly higher cost than GiveDirectly (because of the small scale of the project, overhead is proportionally higher) and the best is that we save children from early deaths and make them win years of life with as little as 49USD a month (588 a year).
We also think the first family identified has such a brutal story, which we won’t share here, that the children are significantly worse-off than the average children with sickle cell in Cameroon. We think the effect of the first donations securing the next 3 years of transfers for this family should be higher than if the project had a larger scale and covered hundreds of families systematically. On the other hand, there is a point to be made about prioritizing families when the child is between 1 and 3 years of age and mortality peaks, and this specific family has already passed that stage.
You can check out the project on this page. Help children with sickle cell syndrome - GlobalGiving and other sickle-cell projects in GlobalGiving here: Search - GlobalGiving
How bad is sickle cell anaemia?
We have much better data from developed countries. Life expectancy with sickle cell anaemia could be 42 years for males and 48 for women, as opposed to 75 and 82.[3] Sickle cell-hemoglobin C disease is a bit better: 60 for males and 68 for females.
One of the studies we use as a reference followed 3,764 patients of different ages[4], and included investigation on 209 patients who died. 33% of those who died, died during an acute sickle crisis, and there was a high correlation between early death and some key symptoms of sickle cell anaemia: acute chest syndrome, renal failure, and seizures.
The information available tells us those living with sickle cell are very likely already to have a shorter life, even when they are accessing good treatment. This is sad and may reduce potential cost-effectiveness for our project (even in the best circumstances, patients tend to live less).
How much of the danger can be mitigated with treatment? How much worse is it without treatment?
Without treatment or with bad treatment most children die without reaching adulthood. As late as 1973, the median survival age was reported to be 14 years, and 20% of children died within two years.
So, we think regular treatment can more than triple life expectancy, over time adding 28 years to someone.
Also, mortality is worse the younger the person gets, it peaks between years 1 and 3.
How bad is sickle cell anaemia in developing countries?
Research on sickle cell in developing countries is less detailed and it is not easy to draw a number. Mortality rate could be 50% to 80% for children below five years.[5] The data from 1973 may be a good reference because in sub-Saharan Africa as many as 50 to 90% of children with this condition are estimated to reach the 5th year or die without a diagnosis.[6]
Studies report an interaction between malaria and sickle cell, possible preventing some of the damage caused by malaria, making patients slightly more resistant than the average child with malaria. [7] This potentially could reduce the effect of the intervention, but there is an abundance of bacterial infections that interact very negatively with sickle cell anaemia. This potentially beneficial effect of sickle cell could hint why is it so spread in Sub-Saharan Africa.
The project
Once a family is identified, they receive about 49 USD a month, roughly estimated to be half for food and half for medical costs. These are mobile money transfers and there is no counseling or coaching work, or income-generating element. We think this is good because it would increase the cost per family, even if there are potential beneficial effects in such activities. There is also no prevention or awareness-raising element. Cameroon health system tries to avoid this infection by getting couples tested before marriage, which is a sensible process but misses large parts of the population. The project also does not try to identify children whose parents may not be aware of their condition, which could be a potentially more cost-effective intervention, but if it is implemented at scale may have a calling effect at some point, families may be more interested in getting their children tested.
There are families identified, should more funds be raised, and potentially hundreds could be identified through local health centers.
[1] Yes, we realize this name is not very creative.
[2] In our first year, we were a grantee of the EA Infrastructure Fund, we thank them for their donation that helped us set up our structure and identify this project.
[3] Life expectancy worldwide by development level 2023 | Statista
[4] Mortality In Sickle Cell Disease -- Life Expectancy and Risk Factors for Early Death | New England Journal of Medicine (nejm.org)
[5] A Critical Review of Sickle Cell Disease Burden and Challenges in Sub-Saharan Africa - PMC (nih.gov)
[6] Sickle Cell Disease in Sub-Saharan Africa - PMC (nih.gov)
[7] Sickle Cell Disease in Sub-Saharan Africa - PMC (nih.gov)
I love your framing of this cost and agree with your central thesis, that cash transfers to families with sickle cell might be more cost effective than general cash transfers, while not necessarily being the most cost-effective option. It may well be the most cost-effective of the projects you reviewed as well, so kudos for getting in behind this.
My criticism is more that if the NGO has a great database and connection with families with sickle cell, why not use that infrastructure and the money to help the kids medically in ways more effective than a cash transfer? Buying mosquito nets, deworming and I would argue giving proper medical treatment for sickle cell are more cost-effective than cash transfers.
In this case I would boldly predict you could do more good by actually providing the best medical care you could with that money rather than giving it to the family. Also in sickle cell where medical catastrophes are basically guaranteed, cash transfers might well get used up BEFORE catastrophes happen which would be tragic.
I'm assuming this stuff below is not readily publicly available in Cameroon - some of it might well be then you didn't
If I had 47 dollars a month to help kids with sickle cell I would set up accounts with local health facilities to provide these services for each kid.
1) Pay for the basic monthly meds for sickle cell (pen-V, folate, malaria prevention, pain relief) ($8 a month)
2) Most of these kids would benefit from hydroxyurea ($10 a month)
3) Send a motorbike to pick the kid to take to hte health center AS SOON as they get sick - fast access to healthcare is critical in sickle cell ($5 per month)
4) Administrating the project ($15 a month assuming something like one/two people administrating 20 families)
5) A pool of money which pays for catatrophic hospital admissions when needed ($9)
I might be missing something or overstepping with this suggestion but that's my hottish take ;) For background I'm a doctor here in Uganda with a decent amount of experience with Sickle cell.
This is very useful and we could possibly improve the basic model with some of these suggestions
Thank you very much
We have added the cash transfer cost , to 91$ after the beneficiaries reported consuming it all on regular medical treatment, when a new regular drug was included in their treatment, pen-V