Financial Compensations for Lung Cancer Volunteers

As I have worked on lung cancer advocacy as a volunteer, I found some volunteer work can be paid for by pharma and some non-profit organizations. In addition, the pharma and the organizations have an interesting relationship with the patients. We need each other.

A perfect working relationship

As one example of a working relationship pertains to clinical trials. Clinical trials are an inevitable part of putting the newly developed drug on the market. Therefore, pharma needs to know the patient experiences of clinical trials. This is needless to say that one of the pharma's primary goals is profit, but it's essential to provide the patients with good service. Some organizations need to know the patients' experience to make their service relevant.

At the same time, the patients have experienced and accumulated incredible knowledge of lung cancer. Pharma and those organizations need such experience and expertise. We often say that the doctors and pharma may be the experts treating (lung) cancer, but the patients are the experts living with (lung) cancer. So we need each other to conquer cancer.

Sounds fantastic, right? But there are some caveats. Here, I mainly talk from the patients' perspective.

Pharma doesn't say, and patients don't ask

From my volunteer experiences, sometimes the pharma or non-profit organizations stated upfront that there is compensation or honoraria for the work, but not mention the amount, the expectation, and the time needed. Sometimes, nobody said anything about the payment until later offered. It's like the patients are kept in the dark passively. It's up to the pharma and the organizations to decide compensation.

At the same time, I noticed that patients don't ask if they get paid as if the patients are ashamed to ask and they only give the information for money. It doesn't matter, financially, the patients are better off or not. Many patients are looking forward to some compensation for our work keeping in mind that having cancer is expensive.

In the beginning, I was naive. I thought I had specific knowledge and experience after having lung cancer for six years and have many side effects and treatments. If somebody can use my experience to make their lives better, I'm all for it. However, thinking collectively, patients' experience can make the design of clinical trials feasible or grant review of cancer research relevant to the patients, or the communication of biomarker testing accessible to the patients, etc. I now believe that the patients provide vital information, and we trade our experience and knowledge with pharma and those organizations. We should get compensated. Why should I (we) feel sheepish to get compensation for what I (we) deserve rightfully?

Poor education about money

When I was a young child growing up in China, my school and parents didn't teach me anything about money. It seemed I should figure out everything about money by myself. Furthermore, money or the loving of money was considered evil and shameful. It is an emotional hurdle. This view is not unique in China but similar all over the world.¹ We don't learn anything about money, but after graduation from schools and universities, we spend almost all our life thinking about making money. Isn't it ridiculous?

After receiving my PhD degree, the Dean of Engineering told me the salary when I got my university job in Canada. I immediately said ok and changed the topic. I was not comfortable talking about money. The Dean was surprised by my response that I agreed so fast. I realized several years later that I saved Dean's work to negotiate the salary. Several years later, I learned the secret and power of negotiating salary.

After I had worked with pharma, I thought about it: Do I deserve the compensation? Should I demand payment? More puzzled me is that why nobody from the patients' side asks about compensation? Am I so money-oriented? What if I ask for compensation, the pharma or the non-profit organizations says no, can we still work together? What am I shamed about?

Patients should be compensated for their contributions

I don't have information from other patients if they want to get paid by sharing their experience and knowledge, but I'm sure I'm not the only "money-oriented" patient. Our services, i.e., the wisdom of the patient experiences and knowledge, are critical for pharma and those non-profit organizations. We trade our service so that we can acquire the service of others.

I started a "baby step": in two interactions with two pharma companies, both times they mentioned to the patients that they will be paid, but nothing happened for at least one month. Like I said, if pharma doesn't say anything, then patients don't ask. So now, armed with my new understanding of compensation, I emailed both pharma companies asking what happened to the compensations. I received responses and got paid within one week.

Through the experience, I learned that there is nothing to be ashamed about that lung cancer patients trade the expertise with pharma and organizations.