Chronic diseases: Stop falling for misleading ads, listen to your doctors!
DR RAFIDAH ABDULLAHAs a kidney specialist, I continue to witness many patients presenting at the very late stage of kidney disease.
The reasons are multifactorial; however, I believe one of them is denial; hence patients opt to try alternative therapies.
Once doctors mention the word “dialysis”, it is like a taboo.
It is not something anyone wants to hear or even go through. In addition, there are many advertisements on social media promoting alternative therapies (various products, herbs, supplements) promising cures for these diseases.
These are not evidenced-based and are against pre-existing rules and regulations. There are regulations that the public needs to be aware.
Firstly, the Akta Ubat (Iklan & Penjualan) 1956. Chronic kidney disease, diabetes mellitus are amongst those listed in the 20 diseases which cannot be mentioned in any activities to promote and sell any products.
Anyone who mentioned any of the listed diseases, they have violated this act.
Unfortunately, I observe many advertisements on social media mentioning many of the diseases.
This has translated into many patients believing in the sweet promises of cure and leading to late presentations to us, in my experience.
Many patients stopped taking their regular medications and clinic follow-ups.
Our study published in an international journal (BMC Complementary Medicine and Therapies, 2021) reported that traditional and complementary medicine (TCM) is widely used by dialysis patients.
Majority used TCM (64.7 per cent) and 72.3 per cent of them did not disclose it to their doctors.
Reasons for not disclosing to the doctors include doctors did not ask (41.2 per cent), patients feeling that it is not necessary for doctors to know (25.5 per cent) and patients hiding it because they know doctors would disapprove (33.3 per cent).
As many would know, I may come across as being very strict in my social media posts. I have made statements addressing many well-known figures openly who clearly do not follow the regulations.
There have been countless personal messages that I have sent to many of these individuals too; begging them not to be associated with sellers who may potentially cause medical complications to patients with chronic diseases.
One in five individuals have diabetes, and one in three has hypertension in Malaysia.
As these diseases do not exhibit symptoms – you do not know whether the person you recommend these products to has these diseases.
If they do, then they are at a very high risk of developing complications including irreversible kidney damage.
Published studies have demonstrated that the public believes celebrities more than us, the healthcare professionals.
Therefore, they may not realise their influence on the public is huge.
This is something I see in my daily practices too. Patients tend to believe products and supplements promoted by them.
Ministry of Health Malaysia has published a guideline titled “panduan kepada selebriti dalam pengiklanan produk kesihatan”.
It clearly states that in promoting any products, all the listed 20 diseases as per the Medicines (Advertisement & Sale) Act 1956 cannot be mentioned.
With these reasons, I am truly hoping that individuals will stop promoting any health-related products.
What I observed as well, celebrities tend to believe products produced by registered healthcare practitioners; without realising that this is clearly unethical.
Doctors are dutybound to conform to Malaysian Medical Council guidelines. Doctors should not produce their own health-related products.
We certainly hoped to get support from religious leaders as well as they are regarded very highly by our society.
I can observe some sell products that do not conform to the said regulations.
Patients are desperate and believe me, they will try anything. I sincerely hoped that the patients are advised to seek help from healthcare professionals and continue to adhere to all our recommendations.
It is our hope too that our society is more aware and makes the right decisions on their own health on who to believe or otherwise.
Some celebrities, well known figures have started to remind their followers about the need to have medical reviews and for that, I would like to express my thanks and gratitude.
I am hoping more and more will help us. Through initiatives of National Kidney Foundation, we are actively looking for individuals to be our "Duta Ginjal”.
We welcome every single one of you on board to join us in this fight against chronic kidney diseases.
Many patients and families think that opting to try alternative therapies is something they need to hide from us healthcare professionals.
Yes, we do not agree with it; but it does not mean we stop caring for you. We disagree because we truly care for you.
In managing kidney diseases, these unregulated products may cause more burden to the already damaged kidneys.
Whatever little function that was left will deteriorate even more if the kidney is burdened. We see this every day. The regrets, the sufferings. Time cannot be turned, and any damage incurred is permanent.
In Malaysia, we face patients who present to us at a very late stage regularly; some would be too late for us to do anything.
This means they come to us when they are really very sick and unstable.
Late presentation increases the risk of complications and death (morbidity and mortality risks). Patients will need urgent dialysis and may likely need intensive care unit support.
Some have difficulties in breathing due to extensive fluid in their lungs. Oxygen cannot be absorbed enough to sustain life. These patients need to be sedated and ventilated – putting a tube right through into the lower part of their lungs and try to regulate oxygen supply from a machine (ventilator).
Some may have very high levels of potassium – causing abnormal heart rhythms (arrhythmia). This can cause the heart to stop (cardiac arrest) and death.
Urgent dialysis procedure poses a huge risk. The risk of dialysis catheter insertion includes death, infection, injury to internal structures and many more.
These risks escalate if the procedure is unplanned and needs to be performed urgently, outside office hours. These complications can be avoided if dialysis therapy commencement is meticulously planned.
We need to be on this journey together and to do that, all parties (doctors, patients and their families) need to have open discussions with mutual respect towards each other.
I strongly urge all chronic kidney patients to inquire from their managing doctors to discuss potential complications or interactions of the alternative treatments they plan to take.
Surely, as doctors, we could not force anything upon you.
The decision of therapy chosen is entirely up to you.
However, we need to be aware of these decisions as surely when complications happen, you will present yourselves back to us at the hospitals.
We need everyone to work together.