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Tuesday, July 17, 2018

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.


Chronic kidney disease patient on dialysis

Supported by:

President/Founder, Dialysis Ph

Wednesday, August 24, 2016

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!

Thursday, October 1, 2015

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

Sunday, December 28, 2014

My New Year's Wish for Hemodialysis Patients in the Philippines (especially Cebu)

Nice to be blogging once again. Been busy with work for the past months and before I realized, a new year is about to start. In between work, I undergo dialysis sessions and boy, there are so many stories there, a lot of them quite sad. And so i am writing my New Year's wish with the hope that somebody out there may be able to do something about these, not for me, but for my fellow hemodialysis patients. Here goes...

1. I wish more dialysis centers are put up in the rural areas or areas outside Cebu City. A lot of hemodialysis patients come from far away places travelling for hours early in the morning to beat the rush hour and to have their dialysis on the same day then either reach home near midnight or sleep in the floor or waiting areas before going home the next morning.

2. I wish Philhealth will provide more free sessions. The life of perhaps almost all hemodialysis patients in government dialysis centers depends on outside funding sources -- from "pork barrel", medical assistance funds, local government assistance funds, PCSO, etc. No funding, no dialysis. In Visayan expression, that's what you call, "Paet!"

3. I wish Hospital dialysis centers pay more attention to staffing needs. Hemodialysis nurses are not there just to insert the needle for hemodialysis and remove it. Patients have to be monitored. Their comfort must be ensured. Their physical complaints and health problems must be heard so they can be addressed accordingly. Patients need human touch, a listening ear and comforting words. With somebody listening to you and chatting with you, hemodialysis becomes something to look forward to, a welcome break, instead of being an experience you can't wait to get over with,

Also, patients need health teachings. With adequate staffing, potential problems like patients' companions coming in and out of the hemodialysis center will be avoided. Infection control problems will be minimized. For hemodialysis centers operating almost 24/7, "in-house" technicians should be always available as hemodialysis units are expected to break down with a heavy workload.

4. I wish all hemodialysis centers have "stay-in" doctors or physicians assigned solely for the hemodialysis unit in all dialysis session shifts. This doctor or these doctors will respond to emergency situations in the center. Also, they will provide health teachings or patient education or awareness aside from checking up and making rounds to all hemodialysis patients in the center especially in government dialysis centers where a lot of patients don't have their own nephrologist. You will be surprised a lot of these patients do not know exactly why there are on dialysis. they were just told that they have kidney failure and they have to undergo dialysis but as to why, they have no idea. In the hemodialysis waiting area, a lot of misconceptions and inaccurate health information are shared by patients themselves or their relatives to other hemodialysis patients and/or their relatives.

5. I wish processing of patient's request for hemodialysis becomes easier which includes registration, availing of labs, availing of hemodialysis supplies and medications is much easier especially in government centers. Remember, dialysis patients cannot tolerate walking at quite long distances. Express lanes catering only to hemodialysis patients within the hemodialysis complex is ideal since hemodialysis is not a one-time thing for patients and there will always be patients undergoing hemodialysis. They don't need to walk in various areas of the hospital for processing causing undue delays.

There you have most important wish list for this New Year. I just hope somebody who can do something will be able to read this.

Meanwhile let's greet new year full of hope and positivity

Wednesday, June 25, 2014

A new chapter begins

How are you my readers? It's been a long while since I last blogged. So many things have happened and I'm really excited to share to you.

One, I have a new job! Yes, I could not believe it! A hemodialysis patient with a new job to help with my health expenses! God is really good and we should never really give up even if we have some sort of disability.

From my career in the private sector, I am now in the government sector as a Research Training Specialist at a government hospital in Cebu...a chance to make a real impact to healthcare primarily by helping residents in their researches with the end goal of helping patients.

And here is my selfie in my new work environment. It's a job perfect for my situation.

The new job was really an unexpected development and I have the Lord to thank first.

Dr. Annabelle Fuentes deserves a very big thank you next, for the support and encouragement.

Thanks to the hospital administration for trusting that I can help them with regards to research.

Thanks to my wife, of course, who is always there for me.

Also to my colleagues in CIM who believed in me.

Work started last week and I am already loving it! It's really nice when you get to share what you learned from postgraduate studies and you see your learners and co-workers appreciate your efforts.

By the way, it will also be a new chapter for me with my dialysis. Why? Because I will be transferring soon to the government hospital dialysis center. And It kinda makes me sad because I already consider as family the staff of my current hemodialysis center as well as the other patients there. They helped me go through my bouts of high fever, UTI, etc. as well as laughed with me through the stories we share while on dialysis. But I will not be leaving them permanently as I will be still guiding the support group I helped establish there in their future activities.

I have some fears though with this impending transfer. Questions like, "How will I adjust to the new machine? to their dialyzer? the new environment?" I hope I will not experience fever as a reaction. Those kinds of fears. But hey, I know the Lord will just be on my side as He always does so I'll just think of him whenever I'm afraid.

P.S. Thanks to Dr. Pherdes and Michelle Chiong-Galbo again for their generosity. And thank you all for continuing to join me in my journey including this new chapter of mine. please do continue to pray for me. Hope you are in good health. Till next post!


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