From Despair to Hope: The Dream and Journey to Free Dialysis and a Brighter Future

More than 40 years ago, my mom received the devastating news that she needed dialysis to stay alive. At that time, dialysis was so expensive that she chose not to undergo a single session, preferring to face the inevitable rather than burden our family with debt. To give you some context, the National Kidney and Transplant Institute (NKTI) had just been established in 1981, and even then, dialysis was a luxury few could afford. It was rumored that President Marcos Sr. himself was on dialysis, which underscored the exclusivity of this treatment.

Years later, my mom's brother faced the same fate. He, too, never had the chance to undergo dialysis. Polycystic kidneys ran deep in our family, claiming the lives of all my mom's siblings. Four out of four succumbed to Chronic Kidney Disease due to Autosomal Dominant Polycystic Kidney Disease. My uncle, the third child of my maternal grandfather who carried the PKD gene, did manage to start dialysis, but the costs were unsustainable. By her early 40s, my aunt passed away after just a few dialysis sessions because they were so prohibitively expensive.

 

I, too, inherited PKD, and it derailed many of my plans, including pursuing residency or postgraduate training abroad. I had to prioritize finding a better-paying job over my passion for teaching in medical school, knowing that my dialysis journey would be an expensive one. In an effort to amplify the voices of people like me, I founded the Smiling Kidneys Club, a local kidney patient group. 

We were a small, dedicated community with limited reach, and many of our members struggled with the high costs of dialysis. Our chat groups became increasingly toxic as frustrations grew, and I found myself overwhelmed with no one to help moderate the discussions. Back then, PhilHealth only covered 45 dialysis sessions, and hospital admissions would eat into these benefits, leaving many patients without coverage by mid-year. Determined to bring about change, I used my social media skills to launch several online petitions to increase the number of covered dialysis sessions. This led me to connect with others who shared the same aspirations. 

Together, we formed Dialysis Ph, starting with less than a hundred members on Facebook. Some of the early passionate advocates like Reynaldo Abacan Jr., Caio Ricerra, Randy Fernandez, along with dedicated caregivers like Russell Rioveros and Vince Ray Mac, were instrumental in our growth. Today, we are a community of 72,400 members, sharing knowledge, talents, and experiences. We’ve become a vital voice for dialysis patients across the country, providing feedback on new policies and PhilHealth circulars. 

In my role at the hospital, I often feel like I'm living a double life, quietly working from home, much like Clark Kent in his everyday disguise. On the surface, I'm just another disabled individual, seemingly disconnected from the larger world, with my contributions going unnoticed. My research contributions hasn’t always been recognized, and it often feels like I’m voiceless in the grand scheme of things.

But behind the scenes and off office hours, I’m actively using my research skills to make a difference. I participate in Health Technology Assessments, advocate for the inclusion of essential medications in the national formulary, and collaborate with PhilHealth and dialysis patient advocates on policy development and monitoring. We already succeeded with Sevelamer and hoping the same success with Cinacalcet. My fellow patient advocates also work closely with lawmakers and other health champions to combat kidney diseases and prevent other diseases with front-of-pack labeling, Konsulta package, etc.

The journey we've been on is truly remarkable. What started as a small, unheard voice in Cebu along with other unheard voices in Bulacan, Baguio, etc. has grown into a collective effort that resonates across the nation, thanks to the dedication of the Dialysis Ph community and the support of countless advocates. We've seen PhilHealth coverage expand from 45 to 90 to 144 and now to 156 dialysis sessions. Admissions no longer eat away at dialysis benefits, and we're on the cusp of achieving zero copay for dialysis, along with coverage for crucial labs and medications. What once seemed like an unattainable dream is now becoming a reality.

Expensive dialysis is transforming into free dialysis, with the possibility of no copay starting this September 2024 hopefully. I can’t thank God enough for the progress we’ve made.