Ask me anything about how Mobile Technology can Transcend the Stigma around HIV/AIDS

Sohrab Amiri
Jan 10, 2018

My name is Sohrab and I am the founder of Cumasu. 

Cumasu is a mobile platform allowing patients in Nairobi, Kenya to schedule appointments anonymously via any cell phone while receiving reminders about their appointments and prescription intake to improve their adherence. We also will use the platform to provide constant information and motivation in order for the patients who are suffering from the stigmatization of sensitive diseases such as HIV/AIDS to battle self-stigma first. 

The platform will aid in building a system of trust between health facilities and patients allowing patients to transcend the stigma while building up the confidence to understand that HIV is not a death sentence anymore. 

For more information, please check out our Facebook page:


and our crowdfunding campaign which describes in more detail what our pilot project will entail:


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Conversation (68)

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How much does Cumasu need for a startup?

Jan 12, 9:10PM EST0

Currently, we are in need of a total of $4,096 to run a pilot project and build a human-centered design method thinking of a platform and then build a viable revenue model alongside the mentors we work with. 

However, out of that number, we have been able to raise a total of close to $1,200 but are still in need of seed funding. 

Jan 13, 1:50AM EST0

Given that you will be working in areas that are not very well developed and the project is a mobile platform, would you take into account and how would you resolve the fact that not many may have good phones and steady connection?

Jan 12, 9:04PM EST0

Thank you for the question. It is actually a misconception about areas like that with people not having good phones or a steady connection. 

In Kenya, as of 2016, the mobile penetration is at 90% and since this platform does not require any internet and can work on any plastic phone and smartphone, it is very easy and accessible to people. 

I would recommend you take a look at a company called M-Pesa who are literally making the unbanked have financial security now by being able to send money and paying for various kinds of things just via a simple text message. 

Jan 13, 2:19AM EST0

How would you best describe Cumasu?

Jan 11, 3:59PM EST0

Cumasu is a platform allowing HIV-patients to transcend the stigma while receiving support and reminders to improve their adherence to their appointments and ARV treatment while equipping them with the motivation to battle self-stigma first. 

Jan 11, 4:22PM EST0
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How do you plan on remedying those challenges?

Jan 11, 10:45AM EST0

I plan on remedying those challenges by first and foremost, providing a safer channel that allows them to access diagnosis in the first place with health facilities we trust and collaborate with. Then we will continuously remind them to take their prescription intake and come for secondary check-ups as well while providing them with information and motivation of their own situation to battle self-stigma first. 

After speaking to a few people and reading plenty of research and memoirs, it demonstrated that in some cases these people stigmatize themselves believing that they are deserving of their situation. 

Jan 11, 11:21AM EST0

I am HIV positive and doing advocacy mainly online. How can I connect with you?

Jan 11, 2:49AM EST0

Thank you for getting in touch with me. You can contact me at my email: amiri.sohrab@gmail.com, if that does not seem to be your preferred way of communication, check out our Facebook page and send us a message and I will respond to you. 

Looking forward to connecting with you!

Jan 11, 2:53AM EST0

Alright, I will get in touch with you. ;)

Jan 11, 3:02AM EST0

Are the services strictly for HIV/AIDs patients?

Jan 10, 9:17PM EST0

For our pilot project, we wish to work first with HIV/AIDS patients and once we see that it demonstrates to improve the adherence towards appointments and prescription intake, we will then expand this service to Malaria, TB and STI patients. 

Jan 11, 1:45AM EST0
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What mentality do you feel Cumasu will correct in HIV/AIDs patients?

Jan 10, 12:52PM EST0

The mentality we hope our platform will create for patients is to build trust between them and the selected health facilities we wish to work with initially. We want to also instill a mentality of accepting what their situation is but realizing that HIV is not a death sentence anymore by equipping them with information and constant motivation to battle their self-stigma first and then aid them in becoming leaders in their own communities to speak out against these issues by becoming a direct connector for others who are suffering with a focus on young people. 

Jan 10, 1:00PM EST0

Where will information given to the patients be sourced from?

Jan 10, 11:13AM EST0

The information given to patients will be sources initially from doctors, nurses of the clinics we work with alongside the organizations such as KANCO who have since 1990 worked on destigmatizing HIV/AIDS, Malaria, TB, etc. until we can bring on our own team of experts.

Jan 10, 11:32AM EST0
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How often will patients be followed up?

Jan 10, 6:09AM EST0

Great question. Depending on how far the date of their appointment is, we will generally send them two reminders with one being a day before the appointment and the second being a few hours prior to their appointment. 

Thank you for your question. 

Last edited @ Jan 10, 11:57AM EST.
Jan 10, 6:11AM EST0
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Who provides the prescription for the patients?

Jan 10, 12:30AM EST0

The prescriptions in Kenya are usually provided through the public sector through the expenditure of the government as the treatment can be too expensive for regular citizens to pay for. After conversing with a well known private clinic called Penda Health which has 6 clinics across Nairobi, I was told that the way the treatment is given by the public sector is mostly careless and without sincere solidarity and support as compared to if private sectors, NGOs or other organizations do it. 

Great question and I hope this answered it!

Jan 10, 2:00AM EST0
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How aware are patients about Cumasu?

Jan 9, 10:47PM EST0

At the moment, nobody other than a few organizations with whom I am in touch with are aware of my project. This is still in its early stage but this is why I am seeking the support of people all around to even donate as little as $5 to my campaign so I can be on the ground and meet with the clinics and meet patients, doctors, nurses and organizations who do work in this field to bring awareness about our platform and request a chance to pilot it with their health facilities. 

Jan 10, 2:02AM EST0

What services does Cumasu provide?

Jan 9, 3:24PM EST0

The services that we wish to provide with Cumasu 1.0 is the ability for patients to schedule appointments via text messaging and an interactive mode where we send them constant reminders about their appointments and prescription intake to improve the adherence. Eventually, we would like to expand this to allow healthcare practitioners to be able to use their mobile phones to input data to have a medical record keeping component. Thank you for your question. 

Jan 9, 3:36PM EST0
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Have you worked with HIV/AIDS patients before?

Jan 9, 3:24PM EST0

Marizane, great question! I have not worked with HIV/AIDS patients yet, but that is why I am seeking to be on the ground alongside my teammates who are both from Nairobi, Kenya to speak to organizations and clinics who are willing to allow me to speak to HIV-patients who are currently under treatment or those who have overcome stigma and are comfortable speaking to my team and I about what gaps exist in the healthcare sector for such important services. Thank you again for your question. 

Jan 9, 3:34PM EST0
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I am beyond grateful for the overwhelming support thus far with my Cumasu crowdfunding campaign, the sharing and the love. We have already raised $360 in just 3 days. That is simply incredible and for that, I am incredibly thankful. Please consider donating any small amount even just $5 would take my team and I a long way to get on the ground and start our work and learning process alongside a very dedicated NGO called KANCO fighting stigmatization of diseases and learn from Penda Health Clinic in Nairobi, Kenya. Here is the link to our crowdfunding campaign: https://www.indiegogo.com/projects/cumasu-transcending-stigma-through-technology-mobile/x/17757432#/Please consider helping us make this come to reality. Thank you so much for all your support.

Jan 9, 12:36PM EST0

Havey ou seen the movie "Mully'? If not, it's a true inspiration. Must watch.

Jan 10, 1:09PM EST0

Thank you for the recommendation :)

Jan 10, 1:11PM EST0

How can Cumasu help patients that face rejection?

Jan 9, 12:28PM EST0

That is an incredible question. One of the many reasons why patients in the first place are facing rejection is that many treatment options are provided through the public sector which is underfunded and therefore staff members of those clinics are underpaid and therefore are not offering sincere support that is kind and genuine. 

So, what we aim to do is work with clinics in the private sector and public sector to learn from them what best methods have helped those who were in need of diagnosis and treatment, as well as, learn from patients who have overcome the stigma and learn what best ways in the most culturally relateable way we can communicate with the Cumasu application users to ensure that we are comforting, supportive and providing sincere support. This is for the reason that we want to create a  system of trust between patients and health facilities. 

Thank you for your question and I hope it answers it for now. 

Last edited @ Jan 10, 10:18AM EST.
Jan 9, 12:32PM EST0

Can the services of Cumasu be made available to others outside Kenya?

Jan 9, 11:49AM EST0

That is something we plan on making available across various countries. Thank you for your question. 

Jan 9, 11:50AM EST0

Why did you come up with Cumasu?

Jan 9, 9:06AM EST0

Amazing question. I came up with Cumasu because I have seen a dear friend of mine suffer mentally and emotionally by a sexually transmitted infection and I saw how there was fear for him to open up to almost anybody due to the stigma around it. And as I am an immigrant in Germany and I understand what stigma feels like, through racism, I have understood that there is an intersectional struggle within those two. I always say that stigma is like a physical scar and I have always been an advocate for marginalized communities. As I have also understood by a friend who lived in a refugee camp for a long time, he explained to me how HIV/AIDS and other sensitive diseases are a vicious cycle due to stigmatization and people are dying in their most productive years. HIV/AIDS is not just hurting the individual, it is hurting an entire community and economy. It leaves children orphaned with little to no food security and displaces people within society. 

I hope this answered your incredible question. Thank you once again. 

Last edited @ Jan 9, 9:32AM EST.
Jan 9, 9:30AM EST0
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How many healthcare agencies are willing to work with Cumasu?

Jan 9, 8:46AM EST0

At the moment we are aiming to learn and work with one health clinic in particular that has 5 other clinics in Nairobi as well. The reason why we are keeping it small for now is that we wish to run pilot test runs in collaboration with one clinic to receive a better understanding of how we would need to alter our second version Cumasu 2.0 as well as what additions we need to put in. 

Thank you for your question.

Jan 9, 8:49AM EST0

Is Cumasu backed by the government? If not, have you tried applying for support?

Jan 9, 7:38AM EST0

Thank you for your question Adrian! Cumasu is not backed by any government entity as we are still way too small to even consider that. First, we need to run a few pilot tests and work with clinics, patients, and NGOs to ensure that our platform works and improves the adherence towards appointments and prescription intake of antiretroviral treatment. 

That is why we are seeking the kind support of people who believe in us and the work we want to do. I hope this answered your question! Thank you again!

Jan 9, 7:41AM EST0

What plans are there to help unwilling patients?

Jan 9, 5:45AM EST0

Thank you for your question. At Cumasu, we want to instill a culture of transparency and honesty. Therefore, to be 100% honest with you, at the moment we do not know the right way of doing so because it will take a different method for different people to show the willingness to get checked up and undergo antiretroviral treatment. However, we attempt to make use of SMS- Technology and send out mass texts and encourage people through thoughtful and culturally relateable methods to interact with these people who are not willing to see a health facility. The truth is that stigmatization even happens in health facilities and that is why we are here to rebuild a system of trust between selective clinics we trust and have demonstrated a great sense of solidarity and doctors and nurses who are a support system to encourage patients to open up to us. 

We also plan on sending constant information and motivation to ensure these patients that their situation is alright and by giving them the tools to battle self-stigmatization first, we hope for them to empower others in their own communities to open up and make use of our mobile platform. 

I hope this answered your question, and I know it is not what you might be looking for but I stand here telling you I do not know the right answer, but I will come back with more insights and more tangible methods in doing so. That is why we are utilizing the human-centered design thinking method by backtracking and understanding first of all, why some patients show unwillingness in order to then modify our platform for their necessities. 

Last edited @ Jan 9, 6:53AM EST.
Jan 9, 5:52AM EST0
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