Cure Thalassemia - a social business

To cure (becoming thalassemia free, no more transfusions) with Bone Marrow Transplant (BMT) as many thalassemia children as possible who can't afford the cost of the BMT,thanks to the cross-subsidization business model.

It is a Social Business (as defined by the Nobel Yunus),a non-loss,non-dividend company designed to address a social problem and not to look for profit maximization.

Organization Name

Cure Thalassemia - a Social Business

Organization Website

About You

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About You

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Innovation

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Name Your Entry

Cure Thalassemia - a social business

Explain what the "innovation" is about, e.g., is it the idea and/or the model you use to accomplish the idea, or your understanding of the target population, etc.?

Thalassemia is the world’s most common genetic deadly blood disorder. 1.5% of the world population is a carrier.
It affects about 500,000 children worldwide; it is prevalent in emerging countries like South-East Asia and the Middle-East. Every year more than 100,000 thalassemia babies are born worldwide, and most of them die young.

The children for all their life need regular blood transfusions every month and daily drugs. The average survival age is 15 years. The only permanent cure available is Bone Marrow Transplant (BMT), invented in the 1980's by Prof. Guido Lucarelli. BMT costs are mostly related to the personnel. In India, where the personnel cost is definitively lower, the total BMT cost is about $25-30,000 which is 15% compared to western countries. Such a reduced price, however, is largely unaffordable by the vast majority of the population of low income countries who live with less than $700/year.

Only a few thalassemia families (and even doctors) are aware that a cure is available.

Cure Thalassemia is a financially self-sustainable Social Business (as defined by the Nobel Prize Yunus) whose goal is to cure as many thalassemia children as possible, who can’t afford the cost of the cure, through cross-subsidization business model. In fact, since thalassemia is a genetic blood disorder, rich people are affected just as poor people, so it is possible every 4 paying patients to give 1 BMT almost for free. Such a model has been already successfully proved in the region for cataract by Aravind Eye Care and at Grameen Eye Care Hospital by Nobel Prize Yunus.

Describe how your innovation model is distinct from any other organization in your field?

In South-East Asia there are private hospitals doing BMT, but they can give the cure only to the patients who can afford to pay the full price. There are also some charities and NGOs financially supporting the cost of a BMT, but they must rely on donor's money to be able to cover all the costs. Cure Thalassemia is different because we can give the cure for free to some patients (thanks to the cross-subsidization business model), without relying on donors' money, so that it is financially self-sustainable and scalable.

What type of operating environment and internal organizational factors make your innovation successful?

Guido Lucarelli is the worldwide authority in BMT for Thalassemia and our scientific advisor. Director of the Transplant Program of IME’ has a long history of clinical-scientific experience in the field of BMT He has performed more than 50% of al BMT done in the world. He has published more than 250 scientific papers on this topic.
He is author of the chapter on BMT for thalassemia in the book “Bone marrow transplantation” of the Nobel Prize Thomas.
Pietro Sodani,co-founder & Scientific coordinator,works with Prof. Lucarelli since 13 years,and he has done 400 BMT for thalassemia. He is the inventor of BMT from haploidentical mother to child.

We collaborate with Devi Shetty, founder of the Narayana Hrudayalaya Hospital, the world’s largest heart hospital for children.

How do you make sure you constantly innovate in light of (potential) external challenges, or your growth plan?

The Internet has significantly changed the way people look for reliable information about health-care and possible cure for their health problems; we constantly innovate using every new Internet media and tool (including social media) that is useful to get in touch via inbound marketing all over the world with potential paying patients and their families.

Furthermore, the 2 most famous scientist for the cure of thalassemia are our scientific coordinator and our scientific advisor, so that we are always up to date to the last innovations in the field.

Business Model

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The systemic challenge you are trying to overcome (select one)

Bring accessible healthcare to communities in emerging markets

Health area (target market) where the need is [select only one]

Acute care (hospitalization, etc)

Categories along the health continuum you are covering [select all that apply]

Intervention, Follow-up.

Please describe in more detail: what problem are you trying to solve in the organization's specific context?

Thanks to the cross-subsidization business model, we want to cure from thalassemia the children whose parents don't have the money (about 25-30,000$) to do the BMT, which is the only cure available. Thalassemia is a genetic blood disorder, and rich people are affected like poor people.
In South-Asia and in the Middle-East there is a middle-class who can afford to pay the full price.

Stage that best applies to your solution [select only one]

Piloting (a pilot that has just begun operating)

Core strategies of your business model [select all that apply]

New/redefined roles for healthcare service provision, New approaches to distribution of health products and services, Other.

If other, specify here:

We use the Internet to raise the awareness of the cure and to get in touch with families who can afford to pay the price of BMT

Most relevant tools you are using to implement the strategies outlined above [select only two]

Technology.

If other, specify here:

Please describe your solution in more detail

We use the Internet as a lead generation inbound channel to find potential paying patients. We have a website (http://www.curethalassemia.org) with many information on BMT and how to cure thalassemia; the site has visitors from more than 175 countries.
Furthermore, we use the freemium business model:
- Dr. Sodani gives free advice to email on BMT to patients from all over the world (today more than 1,500 people from 65 countries have used it).
- Every 4-5 months Dr. Sodani visits for free in Bangalore (India) the patients who plan to do a BMT.

The freemium model has helped a lot our online and offline word of mouth, because in thalassemia groups on social media and online forums the parents inform other parents that Cure Thalassemia gives free personalized information and advice.

What are your vision and overall objectives?

To cure (becoming thalassemia free,so no more transfusions) with Bone Marrow Transplantation (BMT) as many thalassemia children as possible,who can’t afford the cost of the cure,through the cross-subsidization business model.

We want to become the biggest organization in the world in this field, comparable to what Aravind is for cataract.

We also want to raise the awareness among parents and doctors that a cure is available, and we will use a lot the Internet to reach this goal, so that we can disintermediate the status quo and different conflict of interests of doctors and/or pharmaceutical companies (it is very sad, but we know that it happens, especially in South-East Asia)
Every 4 paying patients doing a BMT we plan to give 1 BMT at a very reduced price, almost for free.

What is your value proposition?

Our doctors (Prof. Lucarelli and Dr. Sodani) have invented BMT for thalassemia, and they have the greatest experience in the world; they have done about 1.500 BMT’s (about 50% of all the BMTs done in the world) in the last 30 years.
On PubMed,there are 267 scientific papers co-authored by Prof. Lucarelli and 24 by Dr. Sodani.

BMT is done at Narayana Hrudayalaya/Mazumdar Shaw Cancer Centre in India, founded by Dr. Devi Shetty, world’s largest heart hospital for child with the biggest BMT unit in Asia.

Our doctors choose the right protocol, according to the age of the patient,his health conditions,who is the donor,and some other variables.

We can give the best management of complications, since no other team of doctors in the world has such experience in BMT from thalassemia.

Who is your customer(s)?

Parents who have one child suffering of thalassemia who is transfusion dependent; they want to get rid of transfusions thanks to BMT, which is the only cure today available.
In the world there are about 500,000 children with thalassemia, about 100,000 are in India with an estimate of 10,000 new born every year just in India. In Pakistan and Bangladesh there are 100,000 thalassemia children in each country.
India, Pakistan and Bangladesh have about 60% of all the thalassemia children of the world.

What approaches to you use to reach your customers?

We use the Internet (Website, Google AdWords, Facebook, Twitter, Google+) and thalassemia online forums to generate inbound requests of parents who want to know more on how it is possible to cure their child.

We than give free advice via email on BMT and we meet children and their families for free in Bangalore(India).

What are your primary activities?

To get in touch through the Internet with as many thalassemia families as possible who have the money to pay the BMT.
We also constantl update our FAQ page on BMT which is today the most accurate and complete available on the Internet.

Who are your peers and competitors? What problems could these players pose to your success or growth?

We have an agreement with the Narayana Hrudayalaya Hospital(NH), the world’s largest heart hospital for children, and its Mazumdar Shaw Cancer Centre in Bangalore, one of biggest cancer center in the world with a 14 bed BMT unit, the biggest in Asia. The founder is Dr. Devi Shetty, a worldwide known social entrepreneur.
http://www.curethalassemia.org/narayana-bmt-unit
http://www.narayanahospitals.com/specialities/oncology/cure-thalassemia

Our competitors are the other private hospitals doing BMT in South-Asia.

The main problem with NH could be that in the next years we can have so many patients that the BMT unit is not enough; we have already agreed with NH and Dr. Shetty to open other BMT units in other cities where they already have an hospital.

What other challenges - individual, organizational, or environmental – are you currently facing or might hinder future success of your business, and how do you plan to overcome those?

The main challenge is to constantly find potential paying patients through the Internet. To overcame this issue, we use different Internet channels (Search Engine Optimization, Google AdWords, Facebook Ads, Facebook Page,Twitter, Google+, thalassemia online forums) so that if for any reason one of the channels will suddenly become less effective, we don't have all our eggs in one basket. For the same reason, we will explore every new available online channel that will be available.
In the next months we also plan to add some useful videos on YouTube.

Briefly describe your growth strategy going forward

To do BMT you need a matching compatible donor (usually a sibling), but less than 10% of the children have it.

Dr. Sodani has invented BMT using the mother as donor and in the second half of 2013 we plan to do it at the Narayana Hrudayalaya in Bangalore(india), and it will be the first BMT unit in Asia to do it; in fact today it can only be done in 1 hospital in Italy and 2 in the USA.

What dimensions for growth are you currently targeting for your innovation [select all that apply]

New customer group(s), New regions(s), New market(s)/country(ies).

What makes your business "ready" for growth?

Once we will be able to do BMT from haploidentical mother, the potential market is much bigger, because the thalassemia children whose family has the money for the BMT just need to have the mother alive and in good shape, and it is true for 90/95% families.

Another plan is to have as customers the main BMT centers in South-East Asia and Middle-East to teach them how to do BMT from the mother.

What are your key growth objectives?

To became the biggest organization in the world doing BMT for thalassemia, giving 1 every 4 BMT for free to be able to accomplish our social mission to cure children whose families don't have the money, since we are a social business following the 7 principles of Prof. Yunus.

What is your timeframe for growth, in the short and mid-term? What are the growth milestones and key activities going forward?

Within 2013, we plan to start doing BMT from haploidentcial mother at the Narayana Hrudayalaya(NH)/Mazumdar Shaw Cancer Centre(MSCC) in Bangalore(India); in the following 2-3 years we plan to expand it to the other hospitals of NH/MSCC in India, and also to other hospital chains in India, South-East Asia and the Middle East.

The key activity is to improve our online inbound marketing strategy to have as many paying patients as possible, minimizing the commercial cost of acquisition of each patient; at the same time, we will strengthen our collaboration with Dr. Shetty and the NH/MSCC, and we will also look for other partners in other countries.

Organization Country

Italy, RM, Roma

Social Impact

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What has been the impact of your solution to date?

First of all, we have raised the awareness of the cure, because many families (and even some doctors) do not know that thalassemia is curable since more than 30 years. There are many websites available to know about thalassemia, but most of them do not even mention that there is a cure, or they say that it exists but is very risky (without giving facts and figures of the risk).
Our website has had so far 66,000 visitors from 175 countries.
We have given free advice via email on BMT to more than 1,500 children from 65 countries.
Dr. Sodani has visited in Bangalore(India) about 60 patients who plan to do the BMT using the mother as donor, and we plan to start doing it in the second half 2013.

What methods for quantification of social impact are you applying (if at all)?

visitors of web site; number of free advice on BMT given by email; number of patients visited by Dr. Sodani; how may free BMT we have done thanks to the cross-subsidization business model.

Could your solution work in other geographies or regions? If so, where?

Yes, in other South-East asian countries and the in the Middle-East. 90% of the thalassemia children are in those 2 areas.

What is your projected impact over the next 1-3 years?

Within 3 years, we plan to have done about 150 paying BMT from haploidentical mother, being able to give 35 more for free thanks to cross-subsidization.

The website will be the main information hub in the world about BMT and how to cure of thalassemia, with hundreds of thousand of visitors from all over the world.

The free advice via email on BMT will be given to 10/15,000 thalassemia children and families.

Organization's Country of Operation

India, KA, Bangalore

Type of Organization

Non‐profit/NGO

Sustainability

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Elaborate on your current financing strategy

We have raised the initial capital trough family and friends, and we have enough money in cash to cover the costs for the next 12 months, even before starting generating revenues with BMT from haploidentical mother.

Share of revenue generation in total income of organization (in percent)

100

Direct sales to patients or other beneficiaries (in percent)

100

Of the possible sources of these sales listed below, check all that apply to your current strategy

Patients.

Licensing fees, e.g., for technology/franchise model (in percent)

Of the possible sources of these licensing opportunities listed below, check all that apply to your current strategy

Service contract with organizations, e.g., government, NGOs (in percent)

Of the possible sources of the service contracts listed below, check all that apply to your current strategy

Explain your revenue generation strategy in more detail

Through our website, Google AdWords, Facebook Ads, Facebook thalassemia groups and online thalassemia forums, we get in touch with thalassemia children and families from many countries. With the free advice on BMT via email and the free visit in Bangalore(India), we are in contact with them and we explain in details how they can be cured and the cost. If they then want to do the BMT, they must pay what we charge.
We plan to attract paying patients from all over India, South-Asia and also the Middle-Est.

Share of philanthropy in total income of organization (in percent)

Philanthrophy strategies you are using

Explain your philanthropic approach in more detail

Expand on your selections; explain how you will sustain funding over the next 1-3 years.

This is not a capital intensive activity, we already have money for the next 12 months, and we should be able raise more if needed, if it will take longer than planned to have revenues.
We do BMT in an existing BMT unit, so we don't need to raise the money to build and maintain a BMT unit.
Our marketing and sales cost are low, because we use very wisely the Internet and the social media.

Year of launch of the organization

2011

Years in Operation

Operating 1-5 years

Has the organization received awards or honors? Please tell us about them

Google has given us an AdWords Grant of 10,000$ per month of free advertising:
http://www.curethalassemia.org/blog/2012/01/google-gives-adwords-grant

Boehringer Ingelheim Italy supports Cure Thalassemia
http://www.curethalassemia.org/blog/2012/01/boehringer-ingelheim-support...

We want to hear about your “Aha!” moment. Share the story of where and when the founder(s) saw this solution’s potential to change the world.

Eugenio La Mesa was inspired by the social business idea of Prof. Yunus; La Mesa sent him an email and he replied in 1 day. Founders are both cited in his book "Building Social Business".
Inspiration also came from Aravind Eye Care, the pioneer in the field of the cross-subsidization business model.
They decided to start a Social Business for the cure of thalassemia using cross-subsidization.

77 weeks ago Eugenio La Mesa updated this Competition Entry.
77 weeks ago Eugenio La Mesa updated this Competition Entry.
77 weeks ago Eugenio La Mesa updated this Competition Entry.
78 weeks ago Eugenio La Mesa updated this Competition Entry.
78 weeks ago Eugenio La Mesa submitted this idea.