LCNM on a mission to elevate lung cancer awareness

Lung Cancer Network Malaysia (LCNM), a newly minted non-governmental organization seeks to improve lung cancer awareness in the country. Founders Dr Anand Sachithanandan, a consultant cardiothoracic surgeon, and Dr Tho Lye Mun, a consultant clinical oncologist, sat down with MIMS Doctor to talk about their aspirations for the society and their hopes with regards to lung cancer treatment.

The first question off a person’s head would be the justification or need for a society solely focused on lung cancer awareness. Anand said: “We are different from other cancer societies in that we’re very focused … only on lung cancer. All our efforts, resources and activities will be devoted exclusively to this disease. Awareness aside, we also aim to address all stages and all aspects of lung cancer with a multidisciplinary and multimodality approach.” Drawing comparison to other cancer societies, Tho said such focus would enable the society to achieve more in a shorter period of time.

In addition to its single-disease focus, LCNM is also patient centric in its approach—more about the disease and the people, and not so much about the doctor or the hospital. The key message is people should be appropriately screened for lung cancer. Early diagnosis and treatment saves lives. However, LCNM will not recommend any specific hospital or doctor as “we want to be as neutral as possible,” said Tho. Lung cancer treatment should be about the individual patient and the treatment approach, he added.

Looking for a lifeline
Realistically, every society needs a source of funding to carry out its activities, said Anand. “Ideally, we hope to collaborate with various non-healthcare corporate partners to help promote our goals and simultaneously facilitate their corporate social responsibility (CSR) cause.” 

“We are currently networking with several such organizations and hope they will buy into our pitch.” What then, is their pitch? Tho noted that LCNM is an NGO without any commercial or profit motive. By distancing themselves from affiliation with a specific pharmaceutical or medical device company, LCNM can be a neutral voice for lung cancer advocacy. Additionally, LCNM consists of members from both the local private and public healthcare sectors targeting all aspects of cancer care—nurses, radiologists, oncologists, dietitians, surgeons, physicians, pharmacists, and many more.

Membership will be open to all, eventually
Membership into the society is currently by invitation only. However, Anand and Tho were quick to dispel any notion of exclusivity, saying: “We’re still a very new society, and we would like to have everyone on the same page. We have identified like-minded colleagues who are passionate and share a similar vision.”

Anand said: “Over time once we are more established, LCNM will certainly extend membership to a wider group of relevant healthcare professionals nationwide. We want to be inclusive and LCNM recognizes the value of a diverse multi-disciplinary membership and the importance of working with other related societies nationally and regionally to achieve our goals.”

Looking ahead
When LCNM was conceptualized, these two founders laid out some short- and long-term goals. The initial stage is the first 5 years, and, in that time, they hope to see better outcomes in lung cancer. When asked about their definition of better outcomes, Anand and Tho said they hoped to see increased awareness among the GPs and public leading to earlier self-referral, a lower threshold to investigate patients suspected of having lung cancer and earlier referral by the GP to a relevant specialist.  We hope through better advocacy from patient groups, and increased appropriate screening, outcomes will improve. On the last point, Anand said: “Aside from preventative measures like smoking cessation and tobacco control which LCNM strongly endorses, ultimately we hope through our collective efforts to achieve true stage migration so that a greater proportion of Malaysians with lung cancer get diagnosed at an earlier stage, which is more amenable to effective curative treatment with vastly better outcomes.”

Another goal of LCNM is to partake in and support local research activities. Anand said: “One of our goals is to support local research in the area of lung cancer.” While they are unable to fund such work at this moment in time, Anand said LCNM  has the capacity to come up with questions and hypotheses to set the stage for research. “For instance, we know that we have a higher proportion of lung cancer in the nonsmoker compared to the West. Often these unfortunate non-smokers many are female, and the ethnic Chinese seem to be over-represented. We believe this could be due to genetic (oncogenic driver) mutations—they may have a higher prevalence of epidermal growth factor receptor (EGFR) mutations and this is one such area where more study is required. Once LCNM finds its financial footing, Tho envisages the opportunity for the society to partially fund some studies. Of course, supporting research need not be all about the money. Tho said the society could provide wide ranging expertise and a readily available network to collaborate in any research venture. “If an undergraduate or Ph.D student has interest in working on a project with us, we may be able to support them with our expertise and network.”

For now, LCNM is pushing the agenda to increase appropriate targeted screening among smokers and ex-smokers and suggests this is another potential area of study.

LCNM also aims to be the seedbed for lung cancer advocacy. Tho said: “We’re not aiming to be the body that will approach the government and lobby with them, rather, we want the information and awareness created by LCNM to encourage the public to speak out and demand better healthcare from the providers.” This scenario can be seen in breast and cervical cancer, where there is a concerted effort to reduce the price of treatment and to improve screening of those diseases.

Awareness, awareness, awareness
As one of the main aims of LCNM is to increase awareness of the disease, the society aims to run regular roadshows across the country, with their members from different states acting as local coordinators and enablers.
 
Alluding to a small survey among secondary school teachers in one state, Anand said the study found that the many teachers, who are considered an educated sector of society, thought lung cancer only affected smokers and men, and that it was a communicable disease. “Just imagine, if awareness is so low amongst educated teachers how much better would the general public’s understanding and awareness be?” asked Anand. Therefore, there is a need for regular campaigns to educate and increase awareness.  While the message to stop smoking can turn preachy, there is no alternative. The evidence for smoking and lung cancer risk is irrefutable, hence those in the high-risk group must go for screening earlier. Tho added: “Smoking is still the most identifiable and preventable risk factor. Of course, there are other risk factors, but we cannot control the haze or tuberculosis.” According to Anand, screening of high-risk individuals with a low dose CT scan does not contradict efforts of smoking cessation but instead should be done in tandem and provides an opportunity to counsel that person to stop smoking.”

Both Anand and Tho strongly feel the best way to increase awareness of lung cancer, at this point, is by traditional face-to face public and GP forum roadshows and leveraging on social media in addition to conventional media channels eg., radio and television.

Let’s destigmatize lung cancer
One major goal of LCNM is to destigmatize lung cancer and in a way, ‘glamourize’ it to the point people can talk about it without judgment or shame. “We want people and doctors to be able to look at a patient and say, ‘oh he/she has lung cancer’ without being judgmental, thinking that the disease is self-inflicted.” This is particularly important as more non-smokers especially women develop the disease.

Anand asked: “Most of us would find it devastating and unfortunate for a young woman to develop breast cancer, but may not have the same emotional reaction towards an older man with lung cancer? We want to help destigmatize the disease and increase empathy for victims irrespective of causation. We need to change perception and mindsets, but this will take time.”

By destigmatizing the disease, it will also play into the objective of earlier screening and diagnosis, as fear and shame are big barriers to screening.

Ed: MIMS is excited with the goals and vision of LCNM and we hope to help them achieve their vision. The launch of LCNM was featured at MIMS.com. Go to: https://specialty.mims.com/topic/stakeholders-congregate-to-launch-ngo-dedicated-to-fighting-lung-cancer-?channel=Multi-Specialty