The other day while travelling home on a long train journey, I was browsing the NY Times app on my iPhone and came across an interesting story about multiple myeloma in the Health section:
"For many patients with cancers like chronic lymphoma, chronic myelocytic leukemia and now multiple myeloma, longevity lies in the ability of science to remain one step ahead of the malignancy by unraveling its genetic and molecular underpinnings and producing treatments tailored to counter them."
Now, I don't think there is actually something called chronic lymphoma (non-Hodgkins lymphoma (NHL), chronic lymphocytic leukemia (CLL) and chronic myeloid leukemia (CML), yes), but you get the gist of what the reporter is saying – acute deadly hematologic cancers are gradually being turned into chronic diseases.
The main reasons behind this are several fold:
- Greater understanding of the science and biology underlying the diseases.
- Increased number of available therapies that can be sequenced, prolonging overall survival.
- Move from chemotherapy to more targeted therapies, improving quality of life.
- Active drug pipeline in myeloma across several companies, offering increased hope for further advancements in the disease as new combinations evolve.
- Updating of treatment guidelines and new standards (e.g. see this Myeloma example)
In addition, the growth of Myeloma support groups has provided a wealth of online information, practical advice, and emotional support for people suffering with the disease. Some great resources include:
- Multiple Myeloma Research Foundation (run by an incredible myeloma survivor, Kathy Giusti)
- International Myeloma Foundation
- Leukemia and Lymphoma Society
- National Organisation of Rare Diseases
- American Cancer Society
In addition, Pharma companies such as Millennium, Celgene and Onyx/Proteolix are also doing their bit to improve research and outcomes in multiple myeloma in R&D, and some provide people with balanced and fair disease information – not everything has to be promotional. One such example is an unbranded site about Myeloma supported by Millennium-Takeda, the manufacturers of bortezomib (Velcade) called My Multiple Myeloma. Velcade is a proteasome inhibitor that has become the cornerstone of front-line therapy either without or before a stem cell transplant.
Now, let's take a look at the My Multiple Myeloma website. I should disclose here that the agency who are responsible for building the site are a client, although I wasn't involved in the website project itself. I've long had an interest in unbranded sites and disease information from my marketing days, so let's look at what's available at the moment.
The opening site page offers some sensible choices with clear navigation encouraging people to take charge of their disease and some shots of real people who are experiencing multiple myeloma, you can click through and read more about their stories and experiences:
One of the things that many people forget is that cancer is a complex disease, not only in terms of treatment options, but all the other factors that need to be considered. Googling for information can be overwhelming and none of the current advocacy sites offer a one-stop shop for everything. The site looks to reduce this overload and provide a central starting repository for information. Further into My Multiple Myeloma, you can find some other interesting and relevant information such as coping with the disease, working with the health care professionals involved, costs and insurance, understanding emotions, lifestyle advice, and where to find clinical trials for example:
It will be interesting to see how the site evolves over time and hopefully adds useful tools to allow people to engage and share information with each other. Providing relevant information is a good start, albeit a static one, but allowing interactivity and sharing of ideas will help bond those affected even more.
It would be cool to add other practical things such as a wiki for transplant centers, contacts, and other academic centers specialising in the treatment of myeloma, for example. That way, people can find a hospital near them, or even a means of finding local support groups perhaps.
In the past, I have seen significant value in watching patients converse, help and support each other in disease forums because many-to-many is so much more powerful and effective than an isolated n of 1. People need to feel that they are not alone in their fight against cancer, having a sense of support and community really does help mobilise heart and desire to beat the disease.
It always annoys me when people think Pharma companies are only interested in promotional or DTC programs that make money or add ROI; in oncology and hematology, I've yet to meet someone from the industry who didn't care about people, improving survival and outcomes or making a difference to people's lives.
Maybe cancer is just a different world… after all, we have very few placebo controlled trials in this arena; new therapies and combinations typically go head to head against the standard of care in a survival of the fittest approach. May the best ones win and make a difference, which is great news for people suffering from any cancer.
Hope is one thing, but improved outcomes and information are even better.
Kumar, S., Mikhael, J., Buadi, F., Dingli, D., Dispenzieri, A., Fonseca, R., Gertz, M., Greipp, P., Hayman, S., Kyle, R., Lacy, M., Lust, J., Reeder, C., Roy, V., Russell, S., Short, K., Stewart, A., Witzig, T., Zeldenrust, S., Dalton, R., Rajkumar, S., & Bergsagel, P. (2009). Management of Newly Diagnosed Symptomatic Multiple Myeloma: updated Mayo Stratification of Myeloma and Risk-Adapted Therapy (mSMART) Consensus Guidelines Mayo Clinic Proceedings, 84 (12), 1095-1110 DOI: 10.4065/mcp.2009.0603