NOW AN ARTICLE ABOUT THIS CAMPAIGN IS ALSO ON www.sharing4good.org
http://sharing4good.org/article/overcoming-thalassemia-story-paras-article-crowdfunding-campaign
I am my name is Simo and I am the Co-founder of
ENGAGE, Towardsa volunteering inspired society, a
new not for profit working in Nepal. Together with Kalpana, my wife, we decided
to set up ENGAGE ( www.engage.org.np ) to promote a culture of service and altruism and help persons
like Paras.
Paras is a Nepali citizen suffering from thalassemia,
a
blood disorder passed down through families (inherited) in which the body makes
an abnormal form of hemoglobin, the protein in red blood .
Paras is not a simple patient. He is
also an activist and he has set up the All Nations Paras Thalassaemic Care Trust
to advocate for free treatment for all patients of thalassemia.
There are approximately 150 patients in Nepal
and a good number of them live outside Kathmandu, the capital city. Only in the
capital can one get free transfusion however the government is not providing
any support for drug based treatment.
Because this is not an ordinary disease:
If you want to be treated, you need a midol transplant but if you want to survive
on a daily basis you need to:
-HAVE A WEEKLY BLOOD TRANSFUSION
-HAVE EXPENSIVE MEDICINES LIKE EXJADE
(deferasirox) that is produced only by NOVARTIS with an approximate cost/box (28
tablets) of 300 USD!!!!
However in NEPAL, you can hardly get a
transfusion….
What
We Need & What You Get
We need your support for Paras in carrying out an
advocacy campaign in Nepal for lobbying government agencies to provide better
health care treatment for all persons living with thalassemia.
In the following 12 months you can help
Paras to carry :
the campaign under the following key
aspects:
1)
Awareness
Raising
2)
Treatment
and Care
3)
Coalition
Building
4)
Capacity
Building
1) Awareness Raising
1.1 Articles
Paras
will write at least three open-ed pieces for national newspapers in English and Nepali. ENGAGE will help with conceptualizing and editing the pieces that will also
be uploaded on the ENGAGE’s open platform www.sharing4good.org
1.2 Interactions with mass media
Paras and his Trust, with the support of
ENGAGE will organize one national workshop for media people in Kathmandu. In
addition one workshop will be also held in one of the southern regions of the
country.
Through these actions, we hope that journalists
will start reporting and writing stories about persons living with thalassemia
and their families.
2) Treatment and
Care
2.1 National Workshop
One national workshop will be organized
with the Ministry of Health and
Population and National Planning Commission, the key body within the Office of Prime Minister and Council of
Ministers that decides the national budget’s allocations. Through these
high level forums, we hope to be able to initiate a longer term debate about
state’s responsibilities towards persons suffering from thalassemia.
2.2 Interactions with District
Authorities
Paras will embark in a road show in at
least two districts outside the capital city to interact with local officers of
Ministry of Health and Population.
Getting engaged in local campaigning and advocacy remains paramount in order to
create awareness surrounding the living conditions of persons living with thalassemia.
2.3 Lobby with Novartis
Novartis, the multinational drug maker, is
already doing some positive things in terms of drug accessibility in developing
countries. By doing some research we found out that quite a few expensive drugs
for rare forms of cancers are already subsidized by Novartis. We appreciate
this effort but we would like to engage Novartis to include thalassemia
treating drugs in their accessibility programs.
Why not?
Therefore we will try to contact
Novartis and, we will inform them about the actions being organized in Nepal. We
will write a petition to grant some forms subsidization for thalassemia related
drugs produced and ensure their accessibility in developing countries like
Nepal.
3) Coalition
Building
Even with the support of ENGAGE, Paras
and his Trust will not achieve any goals if all concerned stakeholders are not
engaged and involved.
Paras will work with the National
Thalassemia Association and parents and patients to create a national forum to raise
awareness about the disease and ensure free treatment for all persons affected
by thalassemia.
Through this coalition building effort, Paras
will involve local stakeholders in order to devise a national advocacy campaign
for the assertions of the rights of persons living with thalassemia.
4)
Capacity
Building
Paras will travel to the 13th
International Conference on Thalassemia
& Hemoglobinopathies 15th TIF International Conference For Parents
& Patients 20th – 23rd October 2013 - Abu Dhabi – UAE. His participation to
the conference is paramount for him to:
-gain expertise and knowledge on the
latest development on thalassemia
-play a leading role in the Parents
& Patients part of the conference
-advocate for international support to
developing countries like Nepal
The campaign will cover his flight costs
(approx 600 USD) and a decent accommodation in an inexpensive hotel (approx 50
USD per night x4 nights). The organizers have already offered Paras a full waiver
to attend the patients and parents component of the conference.
How we will
spend the money?
1)
Awareness
Raising(20%)
2)
Treatment
and Care (20%
3)
Coalition
Building (20%)
4)
Capacity
Building (20%)
The role of ENGAGE
ENGAGE is conducting this campaign entirely
on a pro bono basis with the support
(also entirely pro bono) of
Middleway Films, a leading social communication company based in Nepal (http://middlewayfilms.com).
If the campaign is successful, ENGAGE
will help Paras to institutionalize his Trust and will support him to carry out
the advocacy and campaign plan.
ENGAGE will support Paras to ensure
maximum level of transparency in the management of the money that, less few
expenses ( like telephone, transportation and banks fees), will be entirely
transferred to the All Nations, Paras Thalassaemic Care Trust in different
installments based on progress reports.
The
Impact
The campaign is a first step to achieve something
big:
-
FREE DRUG
TREATMENT FOR PATIENTS OF THALASSEMIA
-
ESTABLISHMENT
OF CARE CENTERS OUTSIDE Kathmandu
We know that there is a long way to go before
reaching these goals but a successful campaign will be key to set the
foundations for a national movement against thalassemia that will be able to reach ambitious goals.
Other
Ways You Can Help
IF
YOU CANNOT CONTRIBUTE YOURSELF, NO PROBLEM. WE ARE SURE THAT YOU UNDERSTAND THE
URGENCY OF THE CAMPAIGN. PLEASE SHARE THE LINK TO EVERYONE YOU KNOW.
THANKS
