ISSUE 1 | 2021
MAKNA | MAJLIS KANSER NASIONAL | NATIONAL CANCER COUNCIL
WHAT’S NEW
BRINGING NURSING CARE
to Your Doorstep Page 05
ON THE COVER
MAKNA MOBILE VACCINATION CENTRE 2021 Page 13
SCAN HERE FOR DIGITAL COPIES
Contents 01
03 05
FROM THE PRESIDENT’S DESK FRESH OFF THE LAB
In The Search of Better Cancer Treatment Strategy WHAT’S NEW Bringing Nursing Care to Your Doorstep
07
09
FEATURE STORY Going the Distance with Cancer Survivors!
HEROES OF MAKNA Discovering Humanity through Home Visits
Editorial Penasihat / Advisors Dato’ Mohd Farid Ariffin Farahida Mohd Farid Editorial Shahril Shafullah Sophia Ivy Jo Ashira Ahmad Penyumbang / Contributors Dr Nethia Mohana Kumaran Noraini Binti Khalid Matahari Ismail
11
14
ON THE COVER MAKNA Mobile Vaccination Centre 2021
VOLUNTEER A Meaningful Encounter
16
LIFE GOES ON Pursuing Education While Fighting Cancer
18
Two Powerful Lessons From The Pandemic
IMPORTANT MESSAGE: The content here is general in nature and is provided for information purpose only. It is not a substitute for professional medical advice. Please consult your physician on any questions or concerns you may have regarding your health.
Photographer / Jurufoto Yuni Fardzuan Bakri Adnan Demitri Rohaizad
Diterbitkan oleh / Published by National Cancer Council (MAKNA) BG 03A & 05, Ground Floor, Megan Ambassy, 225 Jalan Ampang, 50450 Kuala Lumpur. T +603-2162 9178 F +603-2162 9203 E makna@makna.org.my www.makna.org.my www.facebook.com/maknacancer www.twitter.com/maknacancer Rekacipta / Design SG Global Support Services Sdn Bhd Level 18, Axiata Tower, No. 9 Jalan Stesen Sentral 5, KL Sentral, 50470 Kuala Lumpur. T +603-2260 1717 F +603 2260 2211 www.sgglobalsupport.com
esk President’s D Desk DATO’ MOHD FARID ARIFFIN FOUNDER & PRESIDENT OF MAKNA
01 | NEOPLASIA ISSUE 1/2021
EMBRACING GRATITUDE IN FACING CHALLENGES Dear friends, It has been over a year since the pandemic struck the world. Undoubtedly, it has changed our lives one way or another. Some of us may be adapting well, while others are still trying to gain a foothold amidst the situation. In hindsight, despite everything that happened, I believe that we ought to feel grateful, for every cloud has a silver lining. To be grateful, or as we call it in Malay; “syukur”, is a powerful quality. It is something which helps us to persevere and embrace the hurdles that we face. It strengthens the human will to keep moving on at times in which everything seems bleak. Although it has been very challenging, I am truly grateful that MAKNA can continue to serve underprivileged cancer patients and the public. Alhamdulillah, the dedication and good
work by the frontliners has stimulated the National COVID-19 Immunisation Programme to achieve a rapid vaccination rate reaching up to 500,000 doses daily.
I am proud to share that MAKNA is also taking part in the collective effort towards reaching herd immunity for the country. We recently started the operation of Pusat Pemberian Vaksin (PPV) Bergerak MAKNA in which the first pilot test was done in Nyalas, Malacca. As a former Deputy Minister of Health, I highly urge the public to register and get vaccinated as it is very crucial for us to vaccinate as many people as possible. Through herd immunity, everyone shall have a better protection from the virus, insha Allah. Until then, let’s make sure to always stay vigilant and take care of each other. Together, we shall prevail.
WWW.MAKNA.ORG.MY | 02
IN THE SEARCH OF
BETTER CANCER TREATMENT STRATEGY By Shahril Shafullah
For over 10 years, nasopharynx and cervical cancer have been identified to be some of the most common cancers in Malaysia as reported by the Ministry of Health. It is truly a concerning issue which requires appropriate actions to be taken. Dr Nethia Mohana Kumaran, a senior lecturer at the School of Biological Sciences (SBS) in Universiti Sains Malaysia, is among the many individuals who have played their part in addressing this issue. Together with her team, they aim to have a better understanding on the survival of nasopharynx and cervical cancer cells. 03 | NEOPLASIA ISSUE 1/2021
The BCL-2 pro-survival proteins are frequently upregulated in cancers and are attractive therapeutic targets. Interestingly, different cell populations are addicted to different BCL-2 pro-survival protein(s) for survival. Dr Nethia and her team employ combination of genome editing technology and pharmacological approaches to delineate pro-survival proteins that nasopharynx and cervical cancer cells are addicted to for survival.
Our ultimate goal is to shift from the one-size-fits-all treatment strategy to optimally targeting pro-survival proteins that cancer cells depend for survival. Targeting relevant proteins would save time, cost and result in better patient outcome. Dr Nethia is also very keen on developing an affordable cancer drug for the masses. A common problem with cancer drugs especially with small molecule inhibitors is not their effectiveness but affordability. For instance, cisplatin is a standard care treatment for nasopharynx cancer. However, over the time, patients tend to develop resistance to this drug. One strategy to resensitise cancer cells to cisplatin is to combine cisplatin with natural compounds. Hence, with this strategy in mind, Dr Nethia and her team are currently studying the sensitivity of nasopharynx cancer cells to the combination of cisplatin and mitragyna alkaloids (purified from the local ketum plant). They are also doing some pilot studies to understand the mechanism of action of mitragyna alkaloids using computer modelling. This is a significant effort because by employing natural compounds as therapy for cancer, it shall lower the cost of treatment and make it accessible to patients.
FRESH OFF THE LAB
action, propelling their pilot experiments which then allow them to apply for bigger funding in the future. It also provides visibility for the researcher and their work and this may result in networking with other researchers in the field.
Without a doubt, contribution of women in science has been phenomenal over the years and will continue to be. This is further proved by Emmanuelle Charpentier & Jennifer Doudna, two female researchers who won the Nobel Prize in Chemistry last year. For those who dreams of becoming a researcher, especially girls, Dr Nethia has a special message for you:
Do not listen to people when they say that a job in science does not pay well and that it’s not exciting. If you are in love with science and research, just find ways to do it. Who knows you could be responsible for the next big discovery.
She believes that the services provided by MAKNA, such as the MAKNA Cancer Research Award (MCRA), are fantastic efforts which signify their contribution towards the cancer-control community. Furthermore, MCRA acts as a seed grant for young researchers to put their ideas into WWW.MAKNA.ORG.MY | 04
Bringing Nursing Care TO YOUR DOORSTEP By Shahril Shafullah
We are delighted to announce that our new service, the MAKNA Home Care Nursing, has started its operations. It is one of our latest initiatives which are done in the effort towards providing the best possible care and assistance for cancer patients. The MAKNA Home Care Nursing is a form of mobile clinical service which allows cancer patients to receive nursing care at the comfort of their homes. This service is essential as some patients require extra care, especially those who have already reached Stage 3 or Stage 4 of cancer. In fact, most of the patients visited by our Home Care Nursing team are bed-ridden, some with bed
05 | NEOPLASIA ISSUE 1/2021
sores and unable to take care of themselves. Therefore, the team will help the patients to perform necessary care such as dressing wounds, changing stoma bags and inserting/ extracting urinary catheter. Among the objectives of this initiative are to assess patients’ health, provide appropriate nursing care as well as psychosocial support for the patients after their treatment. Furthermore, through this effort we can share basic nursing skills and knowledge with the patients’ family members, encouraging them to be more involved and engaged with the patient’s care. This will serve as a great morale boost especially for the patient.
WHAT’S NEW
Our Home Care Nursing team is comprised of experienced staff nurses and assistant nurses who are well-trained in the field of cancer. To ensure that we can help as many patients as possible, the team members will be deployed all over Malaysia according to schedule. This first pilot project was done back in 2016 and was met with positive feedback from patients and their families. Since then, we have been developing the project bit by bit and now we are proud to share that it is fully established. Up till 2020, a total of 4,462 patients have been visited by the Home Care Nursing team.
During each visit, the nurses will check the patients’ vital signs such as blood pressure, body temperature, pulse rate and blood oxygen level. On top of that, the patients’ physical status will be assessed according to the ECOG Performance Status.
WWW.MAKNA.ORG.MY | 06
GOING THE DISTANCE WITH CANCER SURVIVORS! By Shahril Shafullah
07 | NEOPLASIA ISSUE 1/2021
FEATURE STORY
Surviving cancer is an astonishing feat which requires such strong will, perseverance and solid social support. Cancer survivors’ success serves as a prime example which demonstrates that the human spirit can set out to achieve when the will is able. Therefore, here at MAKNA, we highly respect all cancer survivors for their accomplishment.
Our gratitude and appreciation go to all participants who made MFVR 2021 a great success. Hopefully in the next series of MAKNA Founder’s Run we will be able to have a physical event in which we can meet and run together, going the distance for cancer survivors.
In conjunction with Cancer Survivor Month last June, we organised the MAKNA Founder’s Virtual Run 2021 (MFVR 2021). Through this event, we aspire to commemorate cancer survivors, inspire the ones recently diagnosed, show support for the families, and spread awareness to the community regarding cancer. MFVR 2021 was the 4th series of the MAKNA Founder’s Run event. In past editions, this event would be held at a specific location, with all participants running together in a designated route. However, due to the pandemic, this year we were unable to proceed with the same execution. Nevertheless, it did not stop us from celebrating our heroes, which is why we decided to have a virtual run. MFVR 2021 was truly a special event for MAKNA as it was our first ever virtual run. The event took place throughout the whole month of June, with the registration period opened in May. A total of 188 participants signed up and completed the virtual run. Most importantly, they were able to join the event safely by adhering to the S.O.P set by the Government.
WWW.MAKNA.ORG.MY | 08
09 | NEOPLASIA ISSUE 1/2021
HEROES OF MAKNA
Discovering Humanity THROUGH HOME VISITS By Noraini Binti Khalid Being a social worker and a part of the MAKNA Home Visit Team, a big part of my duty is visiting the cancer patients under our Bursary Programme. These visits allow us to meet and get to know each of our patients personally. Most of the time, we are welcomed warmly into their homes. We catch up on their lives and rejoice at how far they have come in their recovery. When they share their concerns about their condition or life in general, we try and give them solutions. If we can’t, we simply listen. Our patients generally live in extreme poverty, with most just scraping by. Sometimes, they struggle to put food on the table or afford necessities. The younger ones may not be able to attend school. Life is difficult for them, even without having to battle cancer. Being a single mother to an 8-year-old girl, as well as a caretaker for my elderly parents, I understand what it feels like to worry about family, work, and everything all at once. It is overwhelming and scary, especially when it feels like you are on your own and there is no one who can help you.
That is why my work with MAKNA feels so meaningful. It is because I have experienced all these myself that I gain so much satisfaction from helping our patients. With assistance from our Bursary Programme, our patients can seek treatment and recover from cancer. The financial aid enables them to travel to the hospital for treatment, pay for medical necessities and emergency tests as well as getting surgical equipment. It changes their lives. It is an incredible and humbling experience to see how our visits impact the patients. Having spent so much time with them, I come to understand something: our task is not just an administrative work, it is also a human responsibility. Through these visits, MAKNA has shown me the true meaning of humanity – to love and care for others whenever and wherever possible.
WWW.MAKNA.ORG.MY | 10
MAKNA MOBILE VACCINATION CENTRE 2021 By Sophia Ivy Jo
In response to the Government’s call for volunteers in their nationwide COVID-19 Immunisation Programme, MAKNA has set up a Mobile Vaccination Centre (Pusat Pemberian Vaksin (PPV) Bergerak MAKNA) to take place across Malaysia, focusing primarily on communities in rural areas. 11 | NEOPLASIA ISSUE 1/2021
The MAKNA Mobile Vaccination program is expected to run for seven months starting August 2021 until February 2022. Three mobile trailers are used – one for Peninsular Malaysia, while each in Sarawak and Sabah utilise our Digital Mobile Mammogram Unit as the vaccination unit.
ON THE COVER
The first pilot vaccination program took place at Nyalas, Malacca which involved a workforce of 30 people including doctors, nurses and non-medical staff. MAKNA is targeting to vaccinate at least 300 people a day, with a total of 42,000 vaccine recipients which equals to 84,000 doses throughout the seven months duration.
When the Health Ministry called on volunteers to help speed up the vaccination drive, we felt compelled to do our part in making sure no volunteers are left behind, particularly cancer patients and rural communities, said Farahida Mohd Farid, the General Manager of MAKNA.
WWW.MAKNA.ORG.MY | 12
We will be working closely with each state government and the local health authorities (Jabatan Kesihatan Negeri) to identify underserved areas. We will be provided with list of names of people that requires vaccinations. Unfortunately, to maintain the crowd size, we do not accept any walk-ins, Farahida added. Other partners such as Polis DiRaja Malaysia (PDRM), St. John Ambulance (for Sarawak and Sabah) and Puteri Malaysia Ambulance will be involved to ensure the program runs smoothly. “We need to do our part in serving the communities, in the hopes of achieving herd immunity by getting everyone vaccinated and protected in order to get back to our pre-pandemic lifestyle. It is important for us to be agile and adaptive, especially now that we are living a world where things are uncertain,” said Farahida.
13 | NEOPLASIA ISSUE 1/2021
VOLUNTEER
a Meaningful
ENCOUNTER By Matahari Ismail
After a moment’s reflection, the husband opened up, My wife is weak. Very weak. She could barely walk on her own and even when she mustered the strength to do so, it would be very difficult for her. Over 10 years ago, my uncle was diagnosed with pancreatic cancer. It was a staggering news for me. That was when I realised that life is precious and I wanted to make it count by giving back to others. With that set in mind, I decided to become a MAKNA volunteer. Undoubtedly, it was a decision that changed my life forever.
As a MAKNA volunteer, I am given the responsibility to go to cancer patients’ houses to visit them and their family members. From the visit I would be able to build rapport with the patients as well as ensuring that they are receiving ample assistance. It was during one of these visits that I met an elderly couple; an encounter that left a huge impact in me. The wife was diagnosed with nasopharyngeal cancer, a form of head and neck cancer. Suffering the disease at an old age, the cancer took a heavy toll on her. She became very weak thus limiting her movements. Even at times when she can stand and walk, she could only do so at such a slow pace. For the husband, it is challenging for him to take care of his wife as he himself is having health problems.
WWW.MAKNA.ORG.MY | 14
It is not an easy task for me to bring my wife for her appointment at the hospital. Both of us are not well and it takes a lot of effort. She really needs a wheelchair for easy commute, but we could not afford one, he remarked in a sad, frustrated tone. Due to poverty, they did not have a proper bed to lie on. The wife slept on the couch while the husband on the floor. They spend most of their time watching television together. Despite the ups and downs in life, their love for each other was everlasting. They showed me what marriage is all about.
15 | NEOPLASIA ISSUE 1/2021
Towards the end of my visit, as I was walking out in the driveway, a particular feeling lingered in my heart. I knew that I had to make a difference. So, my wonderful team and I worked on getting a brand new wheelchair for the couple. Thankfully, we were able to raise some funds which allowed us to purchase a wheelchair, three cans of supplement milk and some groceries for them. I strongly believe that every little act of kindness can make a big difference. I am sharing my story in hope that kindness will encourage kindness. Thank you MAKNA for giving me the opportunity to be a part of this beautiful journey. MAKNA has helped hundreds and thousands of cancer patients and their families irrespective of nationality, ethnicity, gender and religion. You can help MAKNA to assist more cancer patients out there by making one-off or monthly donations. Let’s make a difference together, today.
LIFE GOES ON
PURSUING EDUCATION WHILE FIGHTING CANCER By Shahril Shafullah
Cancer can happen to anyone, including children. At the young age of 11, Muhammad Faisal Bin Razuhan was diagnosed with lymphoma which is a type of blood cancer. Being the quiet and shy boy that he is, one could never expect him to face such a critical illness at an early stage of life. It started with him getting a fever which caused him to feel weak and lethargic. He recovered for a while but soon, he fell sick
again. Over time, his sickness became more frequent, alternately came and went away. It was an alarming sign. His mother, Puan Che Kamariah, quickly brought him to the general hospital for medical consultation. To their shock, Faisal and his mother were told the devastating news – he was diagnosed with Non-Hodgkin lymphoma. Coming from a small village in the rural areas, they did not have much knowledge regarding cancer.
WWW.MAKNA.ORG.MY | 16
None of my family members or friends was ever diagnosed with cancer. It was an alien experience to say the least. Having cancer at a young age is challenging for Faisal. On days that he felt too weak, or when he has to go to the hospital for treatment, he is left with no choice but to be absent from school. His condition clearly affected his studies. Despite the challenge, he never abandoned his studies as he realises the importance of education. To get treatment or meet the doctor, Faisal would go to the hospital together with his mother by riding a motorcycle. The journey from home to the hospital is very long but for the sake of his health, they have to endure it. Although it has been a rough time, his mother is always positive and supportive of her son in their fight against cancer. Now, Faisal is gradually feeling better. Although he is not yet totally free from cancer, he is determined to complete the treatment and aspires to finish his studies.
17 | NEOPLASIA ISSUE 1/2021
LIFE GOES ON
TWO POWERFUL LESSONS FROM THE PANDEMIC By Farahida Mohd Farid
The COVID-19 pandemic is nowhere near the end. Even so, it is good to reflect on the year that has passed. Out of the many gaps in the response to the crisis that were observed, our team would like to highlight two, and what we think we can learn from it. One of the more serious holes that quickly became apparent during the first lockdown last year was the struggle of those who were earning a daily wage. With jobs being halted, even one meal a day became almost impossible
for them. NGOs and charitable organisations had to react quickly and step in to feed and look after their welfare in those early months. Moving on to MCO 3.0 in June 2021, the government had decided to select groups of daily wage workers and businesses, which are heavily dependent on daily operations, to stay open. While being mindful of the rising infection rates, a good proactive planning is also needed by taking various other factors into consideration, like the welfare of these groups. WWW.MAKNA.ORG.MY | 18
Not everyone will agree on this, but we should not let this national health crisis cause a humanitarian crisis as well. To further touch on this point; careful planning and implementation of the lockdown is also necessary to ensure that the gap between the urban rich and suburban or rural poor does not grow worse. Again, proactive planning means taking up a more equitable approach compared to an equal approach, where resources distributed and policies made are based on the needs of the group. In fact, Reduced Inequalities is part of the United Nations’ Sustainable Development Goals that was established in 2015. Now, we can finally see the light at the end of the tunnel after over a year of fighting the pandemic, but it still depends on us how fast we get there. Many organisations, even my own, are beginning to make plans to refocus our efforts back to our main cause. This proactive planning is commendable, but I believe it is still too early to fully go back to our main goals. The fallout caused by the pandemic is still being felt, and these gaps should quickly be closed.
19 | NEOPLASIA ISSUE 1/2021
LIFE GOES ON
Many are struggling with the economic effects, and there will be widespread environmental effects from our necessary usage of masks.
Some experts estimate it may take up to seven years before we return to the old normal, which is all the more reason for us to learn from our observations and try to close the gaps. It is not just advisable, it is commendable, so we can move on from this chapter of our history towards something better.
This means that there is still a lot our organisations can do with regards to the current crisis, so plan and allocate some resources to respond to future needs. Our frontliners still need PPE and masks, especially now with the number of COVID-19 cases rising again. We can also continue to educate communities with no internet access on the various types of vaccines, including how and why they need to get them. These are just a few examples of some of the issues that are still at hand. I believe our organisations should balance the current concerns against our future goals.
WWW.MAKNA.ORG.MY | 20
Bring a new meaning to life www.makna.org.my/donate
Shop for a good cause www.makna.org.my/shop
Join us and make a difference www.makna.org.my/get-involved
Your contribution can change lives. Support our cause, together we can move mountains.
Every ringgit raised from this section will literally transform lives. This is where donations “will never go out of fashion.”
There is so much we can do to fight cancer. Every step you take brings us all closer to a cancer-free future.