Endemic Non-Communicable Diseases

Dear Sir,

In countries like India, management of type 1 DM is really a big task due to
socio-economic factors.

I am working at rural hospital & teaching medical institute in central part
of India, where burden of diabetes is quite significant.

We register such patients for insulin supply from local charitable trust and
some partner pharma companies at concessional / subsidised
cost.

Many such patients are getting insulin vials, under juvenile diabetes
program till age of 16 years.

If some centres in same geographical region collaborate, towards initiating
insulin supply for the needy patients, I hope we can tackle the issue.

Thanks.

--
Dr. Amol R. Hartalkar
M.D. (Medicine)

Phone: +91-9850393788

Hi,

I have recently met John Yudkin who is chair of the International Insulin Foundation. Over the last 8 years, he has been working with colleagues to look at patterns of, and barriers to, care for people with diabetes in 7 different low-income countries. They have developed and validated a Rapid Assessment tool (which they call the RAPIA) which, through a process of multi-level interviews, constructs a picture of patterns of care and barriers to access, whether this is due to price of drugs, distribution systems, lack of health-worker experience or other constraints. The data is then used to work with those responsible for health care provision, in Ministries, regional government or NGOs, to develop Diabetes Plans to improve systems of care.

Please, check out the IIF website. They have not worked in India yet, but I'm very interested in issues of access to insulin there (and will be there for a year starting this fall) and would be happy to help see if this approach could be implemented there.


From the website:

The IIF’s Mission is to:
Create sustainable nation-wide access to affordable and reliable sources of insulin through projects that improve distribution and the educated use ...

Hi,

I have recently met John Yudkin who is chair of the International Insulin Foundation. Over the last 8 years, he has been working with colleagues to look at patterns of, and barriers to, care for people with diabetes in 7 different low-income countries. They have developed and validated a Rapid Assessment tool (which they call the RAPIA) which, through a process of multi-level interviews, constructs a picture of patterns of care and barriers to access, whether this is due to price of drugs, distribution systems, lack of health-worker experience or other constraints. The data is then used to work with those responsible for health care provision, in Ministries, regional government or NGOs, to develop Diabetes Plans to improve systems of care.

Please, check out the IIF website. They have not worked in India yet, but I'm very interested in issues of access to insulin there (and will be there for a year starting this fall) and would be happy to help see if this approach could be implemented there.


From the website:

The IIF’s Mission is to:
Create sustainable nation-wide access to affordable and reliable sources of insulin through projects that improve distribution and the educated use of insulin by people with Type 1 diabetes currently unable to obtain it.

To improve the access to insulin for people with Type 1 diabetes by:
Increasing the availability of insulin through improved tendering arrangements; and
Improving distribution to and storage of insulin at Regional and District levels.

To improve efficacy and sustainability of diabetes management for people with Type 1 diabetes by:
Increasing the awareness of appropriate acquisition, use and storage of insulin;
Improving diabetes monitoring by local health personnel, people with Type 1 diabetes and their carers.

To collect accurate information on diabetes prevalence, incidence and morbidity/mortality in participating countries to help local country health authorities plan for future health programmes.

To advocate for and foster research into improving the access to insulin.

To secure commitment by government health departments or other competent health organisations to give the highest priority to the sustained provision of insulin to those whose life depends upon it.

Dear Kasia Lipska,

I hope, International Insulin Foundation should consider starting one of
their diabetes related projects in India at earliest, considering India to
the CAPITAL of Diabetes.

Not only urban population, but even in rural region of India, the prevalence
of Diabetes is estimated to be about 10% as per latest data, which is very
high.

Being catering to health care of rural population, I would be interested in
collaborating with any of such clinical research activity.

Thanks.
--
Dr. Amol R. Hartalkar
M.D. (Medicine)
Cardio-Diabetologist

Assistant Professor,
Department of Medicine,
Rural Medical College,
Pravara Institute of Medical Sciences (PIMS)
P.O. Loni (BK)
PIN - 413 736

Tah. Rahata,
Dist. Ahmednagar (Maharashtra) India

Phone: +91-9850393788

--
Dr. Amol R. Hartalkar
M.D. (Medicine)

Phone: +91-9850393788

Hello Sandeep,

Not sure what country you are currently working in, but my experience
working with youth with type 1 diabetes in some 20 plus countries around the
world from wide spectrum of socioeconomic levels is that a lack of
education is just as dangerous as a lack of insulin.

Unfortunately we are all faced with the reality that the majority of the
world's youth with diabetes cannot afford the $3k+ per year it costs to
manage their diabetes without adjunct support (ie, insurance, local diabetes
associations, family financial support, etc) as it is just a prohibitive
amount. But if we are speaking about material resources, what many people
don't appreciate is that insulin is not the main cost barrier to living
happy and healthy lives with diabetes- it are the test strips which
typically cost about $1 per strip.

For youth with diabetes to have the type of flexibility that they should
be entitled to in the 21st century in being able to practice diabetes self
management, they typically check their blood sugar 5 to 10 times per day and
adjust their insulin and eat as see fit- that's $5 to $10 per day on test ...

Hello Sandeep,

Not sure what country you are currently working in, but my experience
working with youth with type 1 diabetes in some 20 plus countries around the
world from wide spectrum of socioeconomic levels is that a lack of
education is just as dangerous as a lack of insulin.

Unfortunately we are all faced with the reality that the majority of the
world's youth with diabetes cannot afford the $3k+ per year it costs to
manage their diabetes without adjunct support (ie, insurance, local diabetes
associations, family financial support, etc) as it is just a prohibitive
amount. But if we are speaking about material resources, what many people
don't appreciate is that insulin is not the main cost barrier to living
happy and healthy lives with diabetes- it are the test strips which
typically cost about $1 per strip.

For youth with diabetes to have the type of flexibility that they should
be entitled to in the 21st century in being able to practice diabetes self
management, they typically check their blood sugar 5 to 10 times per day and
adjust their insulin and eat as see fit- that's $5 to $10 per day on test
strips alone.

In some diabetes projects that I and AYUDA (www.ayudainc.net) have been part
of, we have seen some practical solutions that our local diabetes partners
have come up with to face the range of socio-economic backgrounds of their
youth. One such example to highlight the harsh realities is the motto: Plan
A, Plan B and Plan C. Where Plan A meant testing your blood sugar with
strips, Plan B meant learning to test your urine with urine strips to check
for high blood sugars and ketones, and Plan C (the last resort) meant
learning to test your urine for stickiness (an indication that blood sugar
is high). By teaching youth to plan for periods when supplies were scarce,
they were able to provide a level of diabetes education that was appropriate
for all youth with diabetes. However without the knowledge and the
empowerment to know what to do with a certain blood sugar/urine dip/or
symptoms, youth end up in the hospital in DKA whether they can afford
insulin or not.

Anyway, my advice to you and other members of the group working with youth
and families living with diabetes and advocating for non-communicable
diseases would be to make education and empowerment the priority. And how to
do that is whole other discussion!

All the best,
nick


--
Nicolas Cuttriss, MD, MPH
Co-Founder; Chairman of the Board
AYUDA (American Youth Understanding Diabetes Abroad, Inc)
www.ayudainc.net

Office: 703-527-3860
Mobile: 301-717-7624

I appreciate the points being made but from a clinician's perspective,I am keen to understand:

What kind of insulin would be most cost effective?
How can we minimise the number of syringes and needles needed?
What target levels of blood sugar control should be used in such situations?
Can there be any low cost oral agent which can be given as an add on to simplify management and lower costs too?
etc.etc.

Dear All,

This is a great discussion - and a great forum.

Having collaborated with partners in Vietnam at all three tertiary referral paediatric hospitals in the country to help children who are living with T1DM, I would like to add my whole-hearted endorsement of the IIF's work. They completed a RAPIA in Vietnam in 2008, and it has had an impact on insulin supplies for families already.

Additionally, agree that the importance of education can't be emphasized enough - we have had key educational resources translated into Vietnamese (http://www.clanchildhealth.org/index.php?option=com_content&view=article&id=1...), and together with detailed educational training by nurses, families are increasingly empowered to care for their children. Presentations to OPD and admissions for ketacidosis have dropped markedly.

The other important tool we are using to overcome the financial burdens on families is promotion of Betachek visual monitoring strips to monitor BGLs. At a fraction of the cost of meter strips (0.05 versus 0.50+) these strips are enthusiastically embraced by families. http://www.betachek.com/bv.htm

Probably the biggest key though (in our experience) has been the importance of bringing the children who are living with Diabetes ...

Dear All,

This is a great discussion - and a great forum.

Having collaborated with partners in Vietnam at all three tertiary referral paediatric hospitals in the country to help children who are living with T1DM, I would like to add my whole-hearted endorsement of the IIF's work. They completed a RAPIA in Vietnam in 2008, and it has had an impact on insulin supplies for families already.

Additionally, agree that the importance of education can't be emphasized enough - we have had key educational resources translated into Vietnamese (http://www.clanchildhealth.org/index.php?option=com_content&view=article&id=1...), and together with detailed educational training by nurses, families are increasingly empowered to care for their children. Presentations to OPD and admissions for ketacidosis have dropped markedly.

The other important tool we are using to overcome the financial burdens on families is promotion of Betachek visual monitoring strips to monitor BGLs. At a fraction of the cost of meter strips (0.05 versus 0.50+) these strips are enthusiastically embraced by families. http://www.betachek.com/bv.htm

Probably the biggest key though (in our experience) has been the importance of bringing the children who are living with Diabetes (and their families) together as a community, and helping them to grow and develop as a community to achieve better lives for the children. With the community of children as the visual hub, engaging a broad range of stakeholders becomes so much easier. Life for a Child have been really supportive, as have international Diabetes expert health professionals, APPES and other organisations. Families also feel much less isolated knowing they are part of the global diabetes community, and knowing others care about their situation.

On that note, if anyone is interested in getting more involved in promoting awareness of children and NCDs ahead of the UN Summit in Sept 2011, please contact us - we'd love to share your stories! http://www.ncdalliance.org/children

Change is possible when we all work together... Children typically have no real voice, so we really need to come together as their advocates.

Kind Regards,
Dr Kate Armstrong

President & Founder
CLAN (Caring & Living As Neighbours)
www.clanchildhealth.org

I whole heartedly agree. Ideal glucose control is sometimes unattainable and as a result diabetes is ignored on the part of health care providers and patients. Its a learned helplessness. Through the power of education at least diabetics feel there is something they can do themselves to correct their sugars and then they feel more motivated to check their sugars in the first place. We will also have to accept less than ideal to adapt to harsh realities so that at least some intervention is undertaken instead of completely ignoring the situation. The more we simplify guidelines and educate in a stepwise approach with repetition and reinforcement and systematic follow-up, greater the chances for a meaningful change.

Naaznin Lokhandwala MD