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.

My Hemodiafiltration Experience at The Dialysis Co in Cebu City

I have been on hemodialysis in Cebu for more or less 7 years already and in the course of dialysis, I have been to different dialysis centers and have experienced low and high flux dialysers with the conventional hemodialysis. When the opportunity presented itself that I would be able to try a relatively more advanced form of renal replacement therapy known as hemodiafiltration (HDF) here in Cebu, I grabbed the chance. And here is the account of my experience.

the HDF machine

For starters, hemodiafiltration (for those curious) is a form of renal replacement therapy which combines diffusion (what happens in hemodialysis) and convection to enhance removal of solutes at a wider range of molecular weight including middle molecular weight ones not effectively removed by usual hemodialysis. This convection removes these solutes through fluid flow and involves the use of replacement fluid to reach target fluid balance. What does this mean? Greater clearance of urea, phosphate (one of the major concerns of dialysis patients) and Beta2- microglobulin. Beta2 microglobulin is implicated in a disabling condition for chronic dialysis patients known as dialysis-related amyloidosis where patients experience among others, joint pains and pathologic fractures as a result of accumulation of beta2 microglobulin deposits. Others would have carpal tunnel syndrome.  The heart is also believed to be involved in cardiac amyloidosis typically associated to use of low flux dialysers.

Now back to my experience. 

The Dialysis Co (TDC) is a new free-standing dialysis center in Cebu City located on the Upper Ground Floor  of the MDCT Building, Leyte Loop, Cebu Business park just near the Ayala Center mall Cebu which offers hemodiafiltration. This is where I tried hemodiafiltration.

On the way to the center, I passed by Camotes Road then parked on the 2nd floor of the said building where there are reserved spots for TDC near the ramp. The where there is an elevator going to the upper ground floor where the dialysis center is situated.

This is what will greet you on the entrance. A very refreshing atmosphere which does not have a hospital vibe. Well, it's more of a spa vibe that can be felt here. See for yourself.

The waiting area is very spacious and has a TV screen where netflix shows are played.

Inside the actual treatment area has the same relaxing feel.

Does not look like a dialysis facility, right?

So it was time to take my weight to know how much fluid will be taken from me.

A visual inspection of the facility reveals the presence of several equipments including emergency equipment. One could not help notice the unique chairs which do not appear to be like the usual Lazy Boy type chairs in dialysis centers.

The special chair which has movable arms is "armed" with what appears to be a Digital TV with ABS CBN TV plus box for each chair and a food tray. One could bring ear phones or even a USB to play your favorite movie in this TV.

The "dialysis chair" has controls where you can set the inclination of the chair, the height and the length of the lower part of the chair to achieve the best comfortable position for you.

Notice also the brown button for calling the nurse in the station. You won't need to shout or fling up your arms to get noticed when you need to call a nurse. By the way nurses to my knowledge have  1 year to 7 years experience as a dialysis nurse.

And now to the hemodiafiltration itself. For my sessions the dialyser is a special one considered to be a "super hi-flux" dialyser capable of relatively better clearance.

Based on company dialyser information provided online, it is considered highly biocompatible Polysulfone membrane allowing high clearances.

My blood flow was set at 300 and Nadroparine, a low molecular weight heparin was used for my case to keep the blood from clotting in teh dialyser and the tubes during the therapy.

The duration was also 4 hours like the usual dialysis but time just flew by fast since you won't feel the time really as you are either entertained by what's showing on the TV screen or you are preoccupied with what's online as one can access the internet via wifi.

I had no cramps during and after the session and I did not feel weak afterwards. You may have a different experience but I am just relaying mine. In fact I was able to drive, fetch my wife from work then drive home.

Here is the "tape" they used on my access puncture site.

Notice the round thing underneath that applies pressure to the site to prevent bleeding. And by the way, appropriate blankets are provided for the very cool facility and in case it is really cold, there are goose neck lamps and hot water bag available. 

Overall, the experience was very nice and went without incident. I even had a bonus body composition monitor or body water analysis which I am told is offered by this center as additional service.

I was also told they offer various packages which come with free B.Braun Nexadia Patient Data Therapy Card.

If you want your questions about them answered, you may contact (032) 254 8501. If you want to check the facility yourself, they are located at Unit 2, U/GF MDCT Building, Leyte Loop Cebu Business Park Cebu City. 

As for me, I want to do research about HDF and its impact on the patient. I hope to be able to see for myself actual blood test results some length of time after hemodiafiltration. I hope to have that opportunity soon. 

NOTE: Photos of the dialysis center taken with permission from the medical director and owners of the facility.

A Petition for NCDA to Revisit the Definition for Disabled and Consider CKD or Chronic Dialysis Patients as PWDs

July 17, 2018

Sec. Virginia Orogo  
Secretary, Dept. of Social Welfare and Development
Chairman, National Council for Disability Affairs

NCDA Building, Isidora St.

Brgy. Holy Spirit, Diliman, QC

Dear Secretary/Chairman Orogo:

Chronic dialysis patients or chronic kidney disease (CKD) patients on dialysis are among those heavily burdened by their disease which is why any assistance received in the form of Philhealth benefits or PCSO aid is much appreciated. However availing of PWD benefits among CKD patients remain to be a problem.

CKD patients on dialysis are among those affected by the exclusion of chronic illness among those considered PWDs. It has already been years since we petitioned that chronic dialysis patients be considered PWD since Secretary Soliman’s time). In fact, we have obtained an endorsement from former Senator Cayetano for our inclusion in the PWD benefits.

Figure 1. Endorsement letter of former Senator Pia Cayetano

CKD’s current exclusion by the National Council for Disability Affairs stems from the contention that CKD is a disease (like polio) and not a disability. Currently, CKD patients who are to be issued PWD IDs are those who already have physical/orthopaedic or psychosocial disabilities. Apparently, the common belief is that CKD becomes a disability only when a patient cannot walk or has restrictions related to mental health conditions. However, this belief is inconsistent with the definition of disability under Republic Act 7277. Please take note of the terms “physiological or anatomical function”.

Figure 2. Definition of disability under the Republic Act 7277

The kidney is also part of the human anatomy with many crucial physiological functions like filtering waste from our food intake and drugs, regulating and filtering minerals from blood, help produce red blood cells, regulate blood pressure and promote bone health and maintaining overall fluid balance. With CKD, these functions are impaired or start to fail or are already failing. With these, CKD fulfills the disability definition. Not to mention CKD often comes with other problems like diabetes mellitus.

Therefore, what makes CKD itself a disability is because kidney function ( if not with impairments only) has already failed accompanied by other impairments in body function affecting daily living like impairment in blood pressure control (hypertension), impairment in red blood cell production (anemia) and impairments in regulation of electrolytes (ex. Increased potassium in the blood), among many other impairments. CKD is even more “disabled” than those without limbs as failure to have dialysis eventually results in death preceded by manifestations of all disabilities as expected when the kidney fails.

A CKD patient even if he is able to see or walk or hear or think clearly is already considered disabled by virtue of the aforementioned impairments. The dialysis machine for us is like an assistive device just like a wheelchair is for those with mobility issues. Remove a wheelchair, and a person without limbs remains to be considered a living disabled person. Remove the dialysis machine and we lose all bodily functions and die – more than disabled.

CKD like other chronic illness is a disability classification of its own. It is considered an invisible or hidden disability --- a disability that is not immediately obvious but nevertheless is entitled to the benefits of a PWD. The UNCRPD recognizes it. Social Security of the US recognizes it. Even our local SSS recognizes it and our own Department of Health Secretary which works hand in hand with NCDA also acknowledges it as shown by the attached letter by former DOH Acting Secretary Ubial.  

Figure 3. Letter of former DOH Acting Secretary Ubial agreeing that we fulfil the criteria of disability

Unfortunately, NCDA Executive Director Zubiaga does not agree.

So we humbly request your office to ask the NCDA leadership especially Dir. Zubiaga to re-examine and reconsider their position regarding chronic dialysis patients or CKD patients as PWDs by revisiting the definition of disabled, by weighing in facts and expert statements from lawmakers, the Department of Health, the international community including the global community of persons with disabilities and the UN Convention on the Rights of Persons with Disabilities of which the Philippines is a signatory.

#CKDisPWD . And we need your help.

Please consider chronic dialysis patients as persons with disabilities as other qualified persons with chronic illness should be.

In behalf of chronic dialysis patients in the Philippines.

Respectfully,

NARCISO TAPIA, MHPEd, MSPH (Signed)

Chronic kidney disease patient on dialysis

narcisotapia@gmail.com

Supported by:

REYNALDO ABACAN Jr. (Signed)

President/Founder, Dialysis Ph

Back from multiple hospital admissions

I missed you all in this blog. So many has happened during the blogging break (though I constantly post in Facebook).

Almost every month I was admitted. The last time? Just this August! Chronic kidney patients are indeed immunocompromised. We get sick easily. Pneumonia, UTI alternating for me. At one point I had sepsis as my diagnosis. So fellow hemodialysis warriors, fever should not be taken lightly. See your doctor right away. In my case, I had fever and chills.

I underwent cysts aspiration. I am talking about some of my kidney cysts suspected to be infected. The contents of my biggest cysts were aspirated and cultured though there was no growth detected.

Due to my returning bouts of UTI since years past, my bacteria became resistant already to antibiotics including the "strong" ones. I already tried Tienam, Meropenem, Ampicillin-Sulbactam, Vancomycin, etc. Name it, tried it. For the latest admission, I was put on a new combination antibiotic, Cefepime-Tazobactam and an oral drug Azithromycin. Perhaps my bacteria will be surprised this time. It is really very important to use antibiotics judiciously. And I have an infectious disease specialist to help me with that. Together with my nephrologist, I thank them for taking care of me.

In between trials, God has never abandoned me. Each time I needed the funds, someone or some group will donate to help me. I was blessed to present in Palawan my TB research. For the first time, I reached Palawan.

Palawan is so wonderful and despite my condition, I am thankful that God allowed me to enjoy Palawan in my lifetime. The Underground River and the nice beach. Including the crocodile sisig. Yes, crocodile.

Of course, I am thankful most especially to my wife who has remained patient amidst the health challenges. Family support is very important believe me for conditions like the one I have.

God is Good!

See you next blog post!

An appeal to PCSO in behalf of hemodialysis patients in the Philippines

Recently, many of our fellow hemodialysis patients nationwide have been told that they won't be able to avail of the PCSO financial assistance for hemodialysis unless the 90 days free dialysis Philhealth benefit will be consumed.

It is with great sadness that we, hemodialysis patients hear of this new policy in PCSO which some of our fellow patients report to have been started. This may be due to the lack of information regarding what a hemodialysis patient goes through.

Yes we have started this year an additional 45 free sessions from Philhealth but that doesn't mean we won't anymore spend a single cent for our illness. Despite the increase in dialysis day benefits, we still struggle financially just to be able to extend our life. Thus we humbly appeal for PCSO to reconsider due to the following reasons:

1. EXPENSIVE ERYTHROPOIETIN AND TRANSFUSIONS.Hemodialysis patients will still have to spend for erythropoietin injections to avoid blood transfusions. despite the injections, some even require blood transfusions. Sometimes, some of us use oxygen and pay for it. Transfusions and erythropoietin injections are not exactly cheap.

2. OTHER MAINTENANCE MEDS. Hemodialysis patients have other maintenance medications like those for hypertension, elevated phosphorus, diabetes to name some. These medications are expensive taken once, much more if taken several times in a day for life.

3. DIALYZER NOT ALWAYS GOOD FOR 10 SESSIONS. We have to pay for our dialyzer and just to save money, the dialyzer is used for 10 sessions, which is not really ideal (since ideally, it should be single use). In some instances, the dialyzer just cannot be reused anymore and a new dialyzer is paid for even before the 10th session.

4. WE ALSO GET HOSPITALIZED. It is wrong to assume that hemodialysis patients don't get hospitalized. Hemodialysis patients are immunocompromised and are prone to infections and other diseases. Every time a hemodialysis patient is hospitalized, one day is taken from the Philhealth 90 days free benefit which we cannot anymore use for hemodialysis.

5. IDEALLY WE SHOULD TARGET FOR 3X a WEEK DIALYSIS.Perhaps it is not known to many that the preferred dialysis frequency is 3x a week, not 2x a week. Thus, a 90 days free benefit was welcomed with joy as the chance to save up for a 3x a week dialysis is opened. A 90 days free benefit can almost take care of the 2x a week requirement. But with PCSO benefit delayed, patients are left with no choice but to still cut down the ideal frequency from 3x to once or twice a week to keep up with the financial burden. Depriving hemodialysis patients of financial assistance when the 90 days free session is not consumed, will further decrease our chances of getting dialysis 3x as it should.

6. DENIAL OF PWD STATUS. Recently, some hemodialysis patients have been denied PWD status. Criteria for PWD has been applied inconsistently. Some have been told that since they can still walk, they are not considered PWD. The PWD card and the accompanying discounts on dialysis and medicines could have been a big help to us financially. With some unable to avail of the PWD benefits, all the more PCSO assistance becomes important.

6. 90 DAYS FREE SESSION IS NOT ACTUALLY FREE. The 90 days free benefit is almost enough to address the twice a week dialysis requirement.Theoretically. In reality, the 90 days free is NOT actually FREE. The actual price for hemodialysis is more than P2600 (the amount Philhealth used as basis for the standard price.) We still pay hundreds of pesos each session as the hemodialysis price is raised taking into consideration other fees. And besides, as mentioned earlier, hemodialysis should be 3x a week the least.

Therefore, the previous timing of PCSO assistance (distributed throughout the year and not only when 90 free sessions are consumed) prior to this change in policy was very much appreciated as this helped increase our chances of survival with each session added for dialysis. 

We appeal to your kind hearts. PCSO management please reconsider.

This petition is found in https://www.change.org/p/larry-r-cedro-ddm-pcso-asst-gen-manager-for-charity-please-reconsider-decision-giving-dialysis-aid-only-after-90-free-sessions-are-consumed?recruiter=62583127&utm_source=share_petition&utm_medium=copylink

If you support this cause, go to the link and "sign" there. Thank you and God bless.