Changing Diabetes through New Advocacy – by AcT1ve Diabetes

The members of ACT1VE Diabetes share how they completed a challenging task in 2019 to define and present ways life with diabetes can be improved in the Philippines! Read their story in English and Tagalog:

Read in English: 

It all started with a message from Dr. Francis Pasaporte, Director of the Rainbow Camp, inviting young adults living with diabetes in different areas of Luzon, Philippines, to participate in a special activity in Makati City.

On May 24, 2019, all ten participants met one another at Makati Diamond Residences, starting random conversations and catching up with each other. Why all the catching up? Since all the invited participants had already created bonds of friendship during our annual diabetes summer camp, Rainbow Camp Foundation. While we were talking, the questions about our activity kept circulating: What are we going to do here? What will be the topics to be discussed? Who will discuss them? 

We soon found out when Ms. Renza Scibilia from Australia and Mr. Chris Aldred from United Kingdom were introduced. Both grew up with type 1 diabetes and came to Manila, sponsored by Novo Nordisk, to inspire us and to help us advocate for the diabetes population in our country. 

We overcame some difficulties with communicating in English, since most of the participants were more comfortable communicating in Tagalog, and Ms. Renza and Mr. Chris started the discussion with their examples of the best way to start any conversation: by sharing your own story.

They also taught us different techniques and strategies on how to draft a proposal letter or a speech, and we appreciated the mentoring that was happening. During a break from the discussion, we learned that our goal was to prepare a short presentation to give to a representative from PhilHealth, a government insurance agency, on the second day of our conference to show how they could help the type 1 diabetes community in the Philippines. 

We started discussing the different issues and needs of people with type 1 diabetes in the Philippines and narrowed them down. We were divided into two teams and each team got to choose which major aspects they wanted to explore within the issue of accessibility.

Allow us to paint a picture for you: A person with diabetes in the Philippines needs a lot of money to survive. Why is that our reality? Because we spend money on insulin, test strips, quarterly laboratory tests, and quarterly check-ups from the doctor, in addition to basic necessities (food, water, shelter). Due to these costs, quarterly laboratory tests instead become yearly. Quarterly check-ups with the doctor become too expensive, so some opt to go just once or only every other year. Insulin and test strips are also rationed, resulting in the use of cheaper brands of insulin and checking blood sugar to only once every other day. 

Ms. Arcelli Lanorio, a representative from the Philippine Alliance of Patients Organization (PAPO), presented on “Changing Diabetes with the New Advocate Leaders.” She demonstrated that we can value our lives despite living with a chronic condition,- and made us feel that we are not alone in this fight and that we can do anything together. We were also introduced to Ms. Marian Pausanos, a Media Communications expert who gave us a basic idea of how to create an effective and eye-catching campaign to strengthen the message that we were to convey in our presentation the next day. We ended the first day of the workshop with new knowledge, bursting with a lot of ideas on how to help people with diabetes, especially those in dire need.

Who could’ve imagined that through simple sharing of personal experiences, we could come up with concrete, realistic, and practical proposals that could help ease the burden of living with type 1?

On the second day of the workshop, everyone was anxious but ready to go! The first group presented the need to lower the price of insulin and offer patients at least a 20% discount from MSRP. The second group presented the need to offer a monthly supply of blood glucose strips per person with diabetes, in accordance with a rough computation of the monthly expenses of a person with diabetes. Dr. Israel Paragas, Senior VP of the Philippine Health Insurance Corporation, listened to our proposals and gave us valuable feedback on how we can further improve our presentations in the future. 

We all went home to our cities filled with ideas of how we can help people with diabetes just like us. With the help of the people who support us on our journeys with type 1 diabetes, we will never lose hope as we continue our advocacy to help people with diabetes to live life to the fullest with diabetes – ourselves included!

Read in Tagalog:

Isang paanyaya ang aming natanggap mula kay Dr. Francis Pasaporte (Rainbow Camp Director). Nagsimula ang lahat sa simpleng kamustahan, chikahan hanggang sa mapunta na sa kulitan. Dahil kaming lahat ay galing sa iisang organisasyon at ito ay ang Rainbow Camp Foundation Philippines, halos namiss namin ang isa’t isa at iba’t ibang kwento ang aming napag uusapan. Sa mga oras na ito, blanko pa rin ang isip namin kung anong gagawin? anong mangyayari? at ano ang mga topic na pwede naming matutunan? 

Hanggang dumating si Ms. Renza Scibilla na galing mula sa bansa ng Australlia at si Mr. Chris Aldred na mula naman sa bansa ng United Kingdom at tulad namin sila rin ay mayroon din Type 1 Diabetes. Lumuwas sila sa Manila upang magbigay ng tulong at ambag na ideya sa amin dito sa Pilipinas. Nagpakilala sila sa amin isa-isa at syempre medyo madugo ang mga nangyari dahil English speaking pala ang usapan naming lahat. 

Sinimulan nila Ms. Renza at Mr. Chris sa simpleng usapan para makilala nila kami ng mas mabuti at ito ay sa paraang i-bahagi namin ang aming sariling istorya. Tinuruan din nila kami ng iba’t ibang pamamaraan at istratehiya upang magkaroon pa ng mas malawak na ideya kung paano gumawa ng isang Proposal. 

Sinimulan naming talakayin ang iba’t ibang problema at pangangailangan ng mga taong may Type 1 Diabetes sa Pilipinas. Napag-usapan naming na hindi lang pala insulin at strips ang higit na kailangan ng taong may Type 1 Diabetes, nandyan yung meron pang Laboratory test kada ika-3 buwan, konsultasyon, hospital admission, populasyon ng Type 1 sa pilipinas at marami pa. 

Nakilala namin si Ms. Arcelli Lanorio, kinatawan mula sa Philippine Alliance of Patients Organization (PAPO). Binigyan niya kami ng maraming ideya upang mas maintindihan ang halaga ng buhay, yung pakiramdam na hindi kami nag-iisa at kakayanin namin ito kung magsasama kaming pagtutulungan ito. Pinakilala rin sa amin si Ms. Marian Pausanos, isang eksperto sa larangan ng Media Communication. Itinuro naman niya sa amin ang mga pangunahing paraan kung paano gumawa ng isang mahusay at epektibong mensahe na makakatulong sa paglalahad naming nang para sa policy maker ng Philhealth. 

Natapos ang unang araw namin na punong puno ng bagong kaalaman pero napapa-isip kung ano pa ba ang mga paraang magagawa naming upang makatulong sa mga katulad naming nangangailangan din ng tulong. 

Sa ikalawang araw sinimulan na nga naming ang mga presentation na pinangunahan ng unang grupo kung saan pinapakita nila na mas kailangan namin ang tulong sa INSULIN. Ang pangalawang grupo naman ay pinakita ang pangangailangan sa BLOOD GLUCOSE STRIPS. Sa huli ay binigyang kami ng ideya at konting komento ni Senior VP, Dr. Israel Paragas ng Philippine Health Insurance Corporation, upang maarng maibigay niya sa kinauukulan.

Umuwi kami na punong-puno ng kaalaman upang makatulong sa kapwa namin. At Sa tulong ng mga taong sumusuporta sa aming mga may Type 1 Diabetes hinding hindi kami mawawalan ng pag-asa upang patuloy na tumulong sa kanila sa magandang pamamaraan.

Composed, edited and translated by:
Kenneth Paul Ira
Jamie Rose Cinco
Francesca Isabel Villanueva

2 thoughts on “Changing Diabetes through New Advocacy – by AcT1ve Diabetes”

  1. I would like to advocate here. I was diagnosed as a t1d in 1958 at the age of 2. I have lived a full of fun, exciting, enjoyable, and successful almost normal life for my whole time here. In fact I did suffer one incredibly terrifying incident that I wasn’t expected to survive, diabetic or not, when I was stood outside of my car on a UK Motorway (M1) and was hit head-on by a car doing over 80 mph. The ambulance sent to collect me expected its next stop to be the morgue, nobody survives such an impact!
    Even with diabetes I survived and; quite well in fact have continued to live a changed life from that point. According to many of my specialists I have confounded expectations for a diabetic life, but it really hasn’t been hard to do this. I have written my story to help as many diabetics as I possibly can to realise just how good and simple it can be and no matter what life may throw at you we can win the battles!

    Liked by 1 person

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