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Sahar Dost Project
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Arifa Khandwalla



Joined: 22 Jun 2009
Last Visit: 28 Oct 2011
Posts: 14
Location: New York, New York
PostPosted: Fri Jul 10, 2009 10:52 am    Post subject: Reply with quote

I have attached Javed's response to the questions about the CP machine.
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Arifa Khandwalla
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Shahan Zafar



Joined: 22 Nov 2007
Last Visit: 15 Oct 2009
Posts: 10
Location: San Francisco
PostPosted: Tue Jul 14, 2009 10:32 am    Post subject: Some Additional EC Thoughts Reply with quote

Team:
Please find below some additional thoughts from one of our EC members:


Overall, the project does sound promising: the need is urgent, progress should be measurable, and the nonprofit has some experience in the field. I think we need to dig a little deeper into certain issues:

1) Scope: the nonprofit charter addresses the environment, local politics, education, and healthcare, all this in a Rs 375K annual budget. Is the nonprofit philosophy focused enough? Key question here is: are these the right folks to implement this program?
2) Implementation: what is the org's plan to implement the new service? Specifically, are there local medtechs available to run the equipment, will equipment service be included in the leasing/purchase contract, etc?
3) Market: there are 41 thalassemia patients currently identified, and are being served by inferior services in the locality. How inferior? Can we quantify the negative repercussions of current blood screening processes (i.e., could the problem be 50% resolved by simply providing current service providers with better equipment and financial assistance for the needy)?

I think all of us are converging on the conclusion that the $ cost/patient/year has to be low for the project to have a high ROI. Understanding how many patients will be impacted and the useful life of the machine will be key in determining that.

Best regards and looking forward to our first EC call soon.
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Arifa Khandwalla



Joined: 22 Jun 2009
Last Visit: 28 Oct 2011
Posts: 14
Location: New York, New York
PostPosted: Wed Jul 15, 2009 3:06 pm    Post subject: Summary of First Project Call Reply with quote

Summary of First Call on July 11th at Noon EST

Bilal and Arifa were on the call.

We discussed the need for a hematology analyzer and agreed that the need appears to high/medium. The question is how does the hematology analyzer improve treatment for Thalassimia patients in ways that cannot be done by existing lab equipment ?


In addition, we discussed quotes for the CP machine. Bilal found that the quotes given by SDWA were far lower at 580,000 compared to 645,000 from a different company. Further, Bilal found from the agency that the life of the machine can range from 3-5 years depending on usage and maintenance.

We also discussed references. None of the referees have responded back so Bilal volunteered to contact them again.

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Arifa Khandwalla
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Arifa Khandwalla



Joined: 22 Jun 2009
Last Visit: 28 Oct 2011
Posts: 14
Location: New York, New York
PostPosted: Wed Jul 15, 2009 3:20 pm    Post subject: Some Answers Reply with quote

1. In my opinion, this group has the capability to undertake this project. Their current lab is very well equipped. My conclusion is based on a conversation with a doctor friend. Apparently Eliza machines and chemical analyzers are costly. He was very impressed with the lab equipment list and felt that the purchase of a hematology analyzer would complete the lab. I think it would be helpful to see the number of patients that receive services at the blood lab. The hematology machine probably has multiple uses beyond just patients with Thalessimia.

My back and forth with Javed Shah has been very timely and informative. What we do need to watch out for is the tendency to go hitech when it is not always necessary. I think the best person to answer this question is a pathologist or hematologist.

2. What my doctor friend told me is that the one thing that hematology analyzers do that cannot be done by any other machines is figure out who is a carrier of Thalessimia. So if two carriers with the same strain of thalessimial marry, their child is highly likely to get thalessimia. The disease itself is prevalent in 7% of the population according to the Pakistan Thalessimia Federation. Thus genetic and marital counseling will become available with the presence of this analyzer.

3. So calculating the ROI is not as simple as looking at the number of existing patients and the cost of the machine. The machine can potentially help prevent new patients from being born.

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Arifa Khandwalla
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Farhan Khan



Joined: 24 Jun 2009
Last Visit: 02 Nov 2009
Posts: 11
Location: New Jersey
PostPosted: Thu Jul 16, 2009 4:25 pm    Post subject: Reply with quote

I thought the last Saturday's (July 11th) meeting was postponed since I didn't receive any meeting confirmation or timing of the meeting in an e-mail like we received the first time. I was constantly checking my email on Friday and Saturday morning just for that reason.

According to SDWA estimate there are up to 250 Thalessaemia patients in Naushahro Feroze district and 41 patients were registered to the clinic by April 2009.

1. From an ROI aspect, should we check how far is a nearby facility that provides Thalassaemia services that SWDA wants to introduce.

2. SWDA claims in the project proposal that they provide 20%-40% discount on tests. Should we ensure that SWDA is providing those kind of discounts and charging significantly lower prices than market price? We probably don't want to fund the project that is purely for profit generation.
I am not assuming anything here, but I think we have to be critical of all those things.


Regards,
Farhan khan

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Farhan Khan
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Farhan Khan



Joined: 24 Jun 2009
Last Visit: 02 Nov 2009
Posts: 11
Location: New Jersey
PostPosted: Fri Jul 17, 2009 2:29 pm    Post subject: Reply with quote

I noitced in SWDA project proposal that they use "Desferal" to remove excessive iron from the body that requires infusion and is quite painful process. There was a new medicine approved by FDA in 2005 that doesn't require any infusion. I suggest we share this information with SWDA team. If the new medicine is available in Pakistan they may want to start using that.

Below is the excerpt regarding the new medicine from on of the websites:
"Chelation Therapy

To help remove excess iron, patients undergo "iron chelation therapy," in which a drug is introduce dinto the body which binds with excess iron and removes it through the urine or stool. For many years, the only FDA-approved iron chelator was Desferal, which has to be administered through a painful and difficult infusion process. When using Desferal, a needle is attached to a small battery-operated infusion pump and worn under the skin of the stomach or legs five to seven times a week for up to twelve hours.

In November 2005, the FDA approved an oral chelator, Exjade. This is a pill which is dissolved in water or juice and drunk, once a day. Many patients now have an option in terms of chelators, and it is hoped that more options will become available in the coming years."

Regards,
Farhan Khan

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Arifa Khandwalla



Joined: 22 Jun 2009
Last Visit: 28 Oct 2011
Posts: 14
Location: New York, New York
PostPosted: Sat Jul 18, 2009 1:08 pm    Post subject: Project Screening Form Reply with quote

Project Screening form is attached in preparation for the conference call. I emailed the auditors report to your emails. Its a large scanned file.

Farhan,

I think you made some excellent points. We should certainly let Javed know about the recent development in chelation therapy. It could be that since this is a new drug, its expensive and difficult to obtain in Pakistan. Could you please forward the exact URL-

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Arifa Khandwalla
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Arifa Khandwalla



Joined: 22 Jun 2009
Last Visit: 28 Oct 2011
Posts: 14
Location: New York, New York
PostPosted: Sat Jul 18, 2009 1:14 pm    Post subject: Project Screening Form Reply with quote

Project Screening form is attached in preparation for the conference call. I emailed the auditors report to your emails. Its a large scanned file.

Farhan,

I think you made some excellent points. We should certainly let Javed know about the recent development in chelation therapy. It could be that since this is a new drug, its expensive and difficult to obtain in Pakistan. Could you please forward the exact URL-

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Arifa Khandwalla
212-580-1609
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Arifa Khandwalla



Joined: 22 Jun 2009
Last Visit: 28 Oct 2011
Posts: 14
Location: New York, New York
PostPosted: Sat Jul 18, 2009 1:15 pm    Post subject: Summary Form Attached Reply with quote

Summary attached
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Arifa Khandwalla
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Muhammad Bilal



Joined: 22 Jun 2009
Last Visit: 22 Aug 2009
Posts: 7
Location: Lahore, Pakistan
PostPosted: Sun Jul 19, 2009 5:29 am    Post subject: Reply with quote

Please see the FAQ's given at below link. It also briefs about drugs used for removal of excess iron.

http://omairsanafoundation.org/main/faqs.aspx
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Shahan Zafar



Joined: 22 Nov 2007
Last Visit: 15 Oct 2009
Posts: 10
Location: San Francisco
PostPosted: Mon Jul 20, 2009 1:26 pm    Post subject: Summary Conclusions from 1st Project Call Reply with quote

Project Team:
Please find below some key questions we all agreed are key to our better understanding of the merits of the project:

Technical questions
1) Frequency of usage of machine
2) Will the machine be utilized at full capacity? How will it depreciate, and does the non-profit have the required maintenance ability?
3) Do we have the personnel needed to run the machine? Are we dependent upon those personnel (what if they leave)?
5) Who else has this machine what has their experience been?

Medical questions
1) How big is the thalessemia problem? What are the mortality/disability rates?
2) Are there other key medical issues that deliver more return on a small investment? (i.e. classic example is simple mosquito nets for malaria)

Site visit questions
1) Is this the most appropriate site for the machine?
2) Do the current hospitals in the area consider this their most pressing need?

Also, we agreed that we will all reach out to our personal networks to identify doctors who can educate us on the ROI / need / merits of the machine a little bit better. I think we should definitely also use Khurram as a resource for this purpose as well.

Let me know if I am missing anything. Thanks again for pushing this project forward.
Regards,
EC Team
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Farhan Khan



Joined: 24 Jun 2009
Last Visit: 02 Nov 2009
Posts: 11
Location: New Jersey
PostPosted: Wed Jul 22, 2009 9:21 am    Post subject: Reply with quote

Arifa,
Below is the link of the website that talks about new drug.

http://www.thalassemia.org/index.php?option=com_content&view=article&id=19&Itemid=27


Regards,
Farhan

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Farhan Khan
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Farhan Khan



Joined: 24 Jun 2009
Last Visit: 02 Nov 2009
Posts: 11
Location: New Jersey
PostPosted: Sat Jul 25, 2009 11:20 am    Post subject: July 25th - 12:00 PM EST Conference Call Reply with quote

All,
I joined our scheduled conference call for July 25th 12:00 PM EST and waited for 10 minutes but nobody joined. Below are the two conference codes I tried.

Dial-in: +1 (616) 347-8400
Pin code: 841962#
Dial-in:+1 (712) 432-0600 | Pin Code: 582767#

Please let me know if the conference calls have been rescheduled. Please note that I will be out of town on August 1st and August 8th weekends and will not be able to participate in conference calls.

Regards,
Farhan Khan

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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 6:38 am    Post subject: Description of equipment functionality present at SDWA Lab. Reply with quote

Appology fo not getting the required information quick enough, been out of city for some official site surveys.

I have tried my best to get the most out of the people I was due to get these details from.

Regarding the equipment already present at SDWA lab, their brief functionality as understood by me is described below.

Chemistry Analyzer: Used for sudy of chemistry of blood. Its ionic structure, enzymes and to estimate quantities of different elements present in the blood e.g: potassium, calcium, glucose. A common test performed on such analyzer is the one performed for diabetes patients to determine amount of glucose.
Another purpose of tests conducted on chemistry analyzer is to understand the effects of a particular disease on blood. Also helpful in determining what effect a particular medicine / drug has on the patient or what kind of medication is to be advised depending on current structure or composition of blood.

Elisa Machine: Used for the study of quantity of antibodies in the human body. Antibodies normally develop in body in response to an infection either internal or external. Conducting such test helps in determining the amount of time virus has been active in the body and the amount of damage it has done or is capable of doing. Medication is prescribed in accordance with the state of antibodies and degree of maturity of virus.

Hematology Analyzer: Sole purpose is to perform a comlpete blood count (CBC). That includes counting number of Red bood cells (RBC's), White blood cells (WBC's). This number is used to estimate haemoglobin level, an essential measurement for thalassemia patients.
Clarification regarding our previous understanding of hematology analyzer being able to diagnose a thallasemia carrier is not correct. It cannot perform this function.

Another equipment named PCR (polymerase chain reaction) is used for this purpose. It studies gene mutation by splitting the DNA into smaller parts. Guides in diagnosing genetically transferable diseases.
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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 6:51 am    Post subject: Reply with quote

This eliminates the earlier confusion about any functional overlapping between these equipments. All 3 types of equipments are used for unique purposes and to get unique information. No one equipment can perform all these functions although such equipments are available which can perform all these together with another few advanced functions.

These tests are not limited to thalassemia alone. These can be applicable to any blood disorder, disease (Hepatitis, HIV) or even a wound or skin allergy. It depends on doctor what kind of information he requires in order to correctly diagnose the disease/problem/disorder for prescribing any medication.

Learning Curve: Operatinng philosophy of Hematology Analyzer is very simple. Anyone who has already worked on similar equipment like chemistry analyzer or Elisa machine can become an advanced level user within a week. Someone unfamiliar with such tests and equipment needs to spend around 1 month as assistant to be able to work independently.

Presence of Doctor: Not required. Common practice of performing such tests on these kinds of equipment does not involve a doctor. Doctor is only concerned with the results of these tests.

Frequency of Use: Depends on doctor how much information he requires and at what frequency he wants the patients to be tested to see any positive or negative effects. Quatity of patients is also a factor. Normally for thalassemia patients a periodic testing on all 3 equipments is required to keep track of progress.

Maintenance: User of similar equipment reveal that if kept in dust free environment the equipment requires rare maintenance unless there is some kind of part failure or short circuiting due to a spill over. On average machine might require maintenance once a year after first 3 years (ONLY an estimate). . Maintenance costs can only be higher if a major part is to be replaced after expiration of warranty period.
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