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Sahar Dost Project
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Muhammad Bilal



Joined: 22 Jun 2009
Last Visit: 22 Aug 2009
Posts: 7
Location: Lahore, Pakistan
PostPosted: Fri Jul 31, 2009 6:55 am    Post subject: Key Facts regarding thalassemia Reply with quote

For your reference and information.

What is Thalassemia?
Haemoglobin is an essential element that is found in red blood cells. It plays the vital function of transporting oxygen through the cells to the body. Thalassemia involves decreased and defective production of haemoglobin or red blood cells (in which case it takes the form of anaemia). Another form of Thalassemia includes the destruction of red blood cells; a condition known as microcytosis. In its mildest form, Thalassemia results in anaemia, while the severest form of Thalassemia could require a lifetime of regular blood transfusion.

Important Facts:

Thalassemia is a genetic disease.
Thalassemia Major is present at birth, and the child cannot outgrow it.
Thalassemia cannot be 'contracted'. It is not infectious or contagious.
Both parents need to have Thalassemia trait in order for the child to contract it.
If a person with a Thalassemia trait marries another such person, the offspring has a 25% chance of developing full blown Thalassemia.
If only one parent has the trait, the trait may be passed on to the child.
A person with a Thalassemia trait shows no symptoms except perhaps for anaemia. Iron supplements don't help, and should not be taken.
Having a Thalassemia trait does not make a person susceptible to any diseases. This trait does not harm the person in any way, and the person can live a perfectly normal life without even being aware that he has a Thalassemia trait.
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Muhammad Bilal



Joined: 22 Jun 2009
Last Visit: 22 Aug 2009
Posts: 7
Location: Lahore, Pakistan
PostPosted: Fri Jul 31, 2009 7:08 am    Post subject: Reply with quote

Another question raised during last project call was If Hematology Analyzer would be the first choice of someone wishing to upgrade/complete his Lab. The answer is both YES and NO. As more advanced and sophisticated equipment is available in the market, it depends on buyer what his specific need is and what amount of budget he has. Hematology Analyzer is definitely the 2nd in preference if not first for someone emphasizing on blood disorders especially thalassemia.

Things to be answered by SDWA should be:

Do they have the required trained staff to operate the machine ?
Is there any backup staff available (OR Is there any plan to prepare backup staff) in case these people leave?
How much involvement will the doctor have in these tests and what experience/skillset he has in this area ?
Will the NGO be able to raise maintenance budget in case the equipment fails after say 2 years?
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Khurram Owais Shah



Joined: 07 Nov 2007
Last Visit: 09 Oct 2010
Posts: 45
Location: Karachi
PostPosted: Tue Aug 11, 2009 12:39 pm    Post subject: Reply with quote

1. What are the ways that a hematology analyzer extends the capability of this lab in Naushero Feroz? In the context of Thalassemia what does a hematology analyzer do that other machines cannot already do? Does it make the treatment process easier for Thalassemia patients? We know that the analyzer helps identify carriers of the disease and no other machine is able to do that. So what sort of capability would the lab have with this machine?

2. How important or necessary is this machine for a lab?

3. What is the prevalance of Thalassemia in Pakistan overall? In context of the larger public health scenario, do Thalassemia management and treatment rank high in importance?

Answers by hemotologist Dr. Usman Shaikh:

1. A hematology analyzer is very important for the management of Thalassemia. For knowing the Hemoglobin level of thalassemia patients and also to screen the carriers. I would recommend the Sysmex KX 21 as a good analyzer, however you have not mentioned the type of analyzer. It can also be negotiated with the vendor for Placement on reagent basis which considerably reduces the upfront cost.
2. Very necessary and important for a thalassemia center
3. The prevalence is around 5-7%. And it ranks very high on priority.
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Farhan Khan



Joined: 24 Jun 2009
Last Visit: 02 Nov 2009
Posts: 11
Location: New Jersey
PostPosted: Tue Aug 18, 2009 12:50 pm    Post subject: Reply with quote

All,
CLARIFICATION: As Bilal mentioned earlier, Hematology Analyzer (HA) [does not[/b] help identify carriers of the disease. I am mentioning that becuase I noticed it was incorrectly stated in Khurram's email to Dr. Shaikh.

Based on the information we have received so far, I think we can say that HA basically helps in determining the count of red blood cells. That in turn helps to decide how frequent a Thalassemia patients needs blood transfusion. Most patients with a major form of thalassemia receive red blood cell transfusions every two to three weeks, amounting to as much as 52 pints of blood a year.
SOURCE: http://www.thalassemia.org/index.php?option=com_content&view=article&id=19&Itemid=27

May I know what's our next course of actions at this point? Please let me know if I need to follow up on any thing.

Regards,
Farhan Khan

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Farhan Khan
ADP Volunteer - Project Evaluator
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Farhan Khan



Joined: 24 Jun 2009
Last Visit: 02 Nov 2009
Posts: 11
Location: New Jersey
PostPosted: Sun Sep 06, 2009 10:44 am    Post subject: Updated Project Summary Form Reply with quote

All,
Attached is an updated project summary form.

Regards,
Farhan Khan

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Farhan Khan
ADP Volunteer - Project Evaluator
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Farhan Khan



Joined: 24 Jun 2009
Last Visit: 02 Nov 2009
Posts: 11
Location: New Jersey
PostPosted: Tue Sep 08, 2009 3:57 pm    Post subject: Action Items from Sunday, September 7th Conference call. Reply with quote

1. Obtain Price List for 30 various lab tests performed by SDWA. Also, what kind of discount SDWA provides to patients who cannot afford lab tests. What’s SDWA criteria to identify patients who are eligible for discounts.


2. The current references provided by SDWA don’t meet ADP’s criteria since they are SDWA’s partners and not the organizations/individuals who are currently providing funding or provided in the past. Ask SDWA to provide correct references, ideally an organization that funded lab equipment few years ago.


3. Shahan will review SDWA’s 2008 audit report to confirm SDWA is categorized as a non-profit organization by the auditors and not a business that works to make profit (ADP doesn’t provide funding to for-profit organizations/businesses).

4. Ideally try to find out local doctors in Naushero Feroz district and try to obtain information for questions listed below from those doctors. If we can’t locate local doctors, ask SDWA to provide doctor(s) contact information.
(A) What do they think about SDWA? Is it an NGO or a business? Do they know whether SDWA provides any discounts to its patients? If yes, what kind of discount?
(B) How critical Thalassemia as a disease is in the districts? What’s the prevalence rate in the district? How many Thalassemic patients reside in the area? Besides SDWA which is the closest lab in nearby area?
(C) What kind of challenges Thalassemic patients in the district due to unavailability of Hematology Analyzer (HA)?
(D) Is HA an appropriate next machine for the SDWA lab based on the equipments they currently have? Do they recommend any other type of machine over HA that may be more critical for the lab?

5. Reach out to pathologists in Lahore and Karachi and try to obtain same kind of information that’s listed above. Shahan will follow up with his Pathologist contact at King Edward Medical College in Lahore.

6. Review sources of funding of SDWA for on-going operational cost. Find out what will be an annual operational cost, if any, for HA machine. If there is any operational cost, how SDWA plans to cover that cost?

7. Is the HA machine/model requested by SDWA most cost efficient? Are there other HA brands/models that offer the same functionality at lower cost?

8. Ask Khurram to obtain information on Reagent pricing and share it with the team? We need to understand what exactly reagent pricing is and how does it work?

Please let me know if I missed or misstated anything. Please review and let's decide what information we already have and where we need to follow up. I am willing to follow up on some of open action items.

As I mentioned yesterday, I will be out of town from Sept 11th - Sept. 20th with no access to e-mail.

Regards,
Farhan

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Farhan Khan
ADP Volunteer - Project Evaluator
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Shahan Zafar



Joined: 22 Nov 2007
Last Visit: 15 Oct 2009
Posts: 10
Location: San Francisco
PostPosted: Tue Sep 08, 2009 4:08 pm    Post subject: Thesis Reply with quote

Thank you Farhan! For the convenience of everyone, here is the email I sent out to the project team:

Team:
We have been going back and forth on the project and I wanted to callibrate everyone on where we stand. As per me, we have an emerging working hypothesis that we need to prove / confirm through our diligence:

1) SWDA is a very legitimate Non-Profit organization. It enjoys strong reputation within the community and is serving the local population pro-bono without any class prejudice for multiple years. The lab is effeciently and professionally run and used by local doctors to provide basic blood work services and Hematology Analyzer is the logical next step / machine SWDA should be installing.

2) The need for Hematology Analyzer is critical. The machine is very basic and necessary for monitoring iron content in the blood of all Thalasemia patients. While Thalesemia unfortunately has no cure, the machine extends the life of the patients and hence has very high implicit ROI. Additionally, the incidence of Thalesemia is "high" in Pakistan and is expected to continue rising in the future. Therefore, the utility metrics / ROI on the machine will be high.

3) SWDA the organization has multiple sources of funding that can foot the recurring expenses of the machine in Year 2 onwards if ADP decides to just foot the seed money / initial capex.

4) SWDA is exploring the most cost efficient machine / sku available in the market. The machine is easily maintained and run.

Here is my take on how we prove the points above:

1) a) References of SWDA. Also, interviews of local doctors and patients who have benefited from SWDA.


b) Existing list of machines that SWDA have. Sources of funding for those machines and their contact information. Years purchased. We want to be able to talk to those foundations/ donors on their experience so far with SWDA


c) Share the existing list of machines with our network of doctors and ask them on their thoughts on Hematology Analyzer as the next machine to add to the list.
d) Site Visit

2) a) Tops-down analysis of Thalasemia incidence in Pakistan. Compare that to number of patients identified by SWDA-



b) Conversations with local doctors who are currently treating Thalasemia patients. Key questions to ask them would be:
- How many Thalasemia patients do you have? How many do you think the region has?
- How will the machine benefit you? How are you treating your existing Thalasemia patients currently?
- Is there any other machine would you rather have that will serve a better purpose for the society as a whole
c) Conversations with doctors in our network. Get their feedback on the urgency/functionality of the machine and how basic they consider the machine to be.
d) An analysis of labs / doctors in major cities that cater to Thalasemia patients. Key questions to address for me are:
- What % of Thalasemia patients in major cities like Lahore, Karachi etc. use this machine?
- If the machine is so basic, how many labs in these big cities carry this Hematology Analyzer?
- What sku / brand of machines do these labs in the cities use? What are their views on the machine we are contemplating?
e) Site visit

3) a ) References on SWDA.
b) List of funding sources to match cash flows of the machine for Year 2 onwards


4) a) Price comparison
b) Conversations with labs in big cities who carry different machines
c) Feedback from doctors


I know we have done some of these analysis already but I wanted to consolidate them for monitoring purposes. We should just tick through all these issues. Most of these questions don’t require a site visit, which is relatively costly. As per me, our next step is to really reach out to as many doctors here in the states and in Pakistan to figure this out. I know Khurram has reached out to his professor but we need to get many more data points to be comfortable. My biggest fear, to be frank, is that we mention this project to a doctor and he/she reacts that ADP is funding a "fancy" or "unnecessary" machine.
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Farhan Khan



Joined: 24 Jun 2009
Last Visit: 02 Nov 2009
Posts: 11
Location: New Jersey
PostPosted: Tue Sep 22, 2009 12:35 pm    Post subject: Reply with quote

Shahan, Arifa
I am back in town. I was wondering if there are any updates since we last met and published the action items? Arifa mentioned in our previous call that she already had received information for some of the action items that we came up with. May I know for which action items you already have the answers and can you share that with rest of the team?

Also, please let me know for which action items you believe we definitely need to follow up? I will be happy to work on some of those action items. Just let me know which items you like me to work on.

Regards,
Farhan Khan

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Farhan Khan
ADP Volunteer - Project Evaluator
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