Fragmented: Online Giving and the Health Landscape

Posted by on July 11, 2011 in Green

Causes are not something we have a shortage of in the online and offline world.

Year after year, online fundraising and initiatives to “make this world a better place” have increased. There is an estimate of 300 million people living in the United States and 1 million registered charities. A common denominator is the influx in online giving, including ease of creating micro-initiatives through virtual portals. We now have wide-open real estate for any individual to create “cause-based” efforts that live online, offline or both.

When it comes to the topic of health, diseases such as cancer, diabetes, MS and Alzheimer’s are some of the many conditions with mass constituencies in this evolving landscape. Regardless of the cause in question, one thing can be agreed upon: there is more support than ever before in terms of donations and awareness, thanks to the floodgate of the Internet.

With the billions and billions of dollars raised for research, the breakthrough developments in medicine and technology and the incredible connectivity of the world at large via internet channels, you would think we are developing new treatments at a much faster pace. Unfortunately, that may not be the case.

There is a growing disconnect between the public’s perception of their individual micro-actions and how that connects toward a tangible outcome: new treatments for these incurable diseases. The main reason is perhaps that ordinary well-meaning donors have not understood the true landscape of health-based causes, how the industry works and where his or her donations are spent.

On average it takes over 15 years and millions of dollars to develop a new treatment for a disease. The journey from the discovery research lab to becoming an approved prescription drug has the following four major steps:

The first step is discovery, where basic researchers explore diseases and genetic and malfunction identification. Scientists then try to identify compounds to treat the malfunction.

The second is pre-clinical development, where these compounds are tested in cell cultures and lab animals to show compound safety and their activity in the disease.

The third is human trials. For Phase I study, the first step is to determine the correct dose for humans. Once the dose is determined, a Phase II study is conducted in small groups of patients to see if the compound has the potential to become an effective treatment.

With this answer, the compound moves to the final step: Phase III study. This is where the compound is tested in a large number to prove that it is statistically better than other drugs. The data is then submitted for approval to the FDA, and the compound becomes a drug.

There are many companies in the midst of developing amazing cures. This post was spurred by learning about a small company currently developing novel new treatments for cancer. The compound is currently in Phase I and is being given to terminal cancer patients for whom all other standard treatments have failed. The compound is already showing promising results. As excited as I was to learn this, I was just as quickly suprised to learn that this potential cure may never make it to market — not without an infusion of capital to continue treating these patients. Without funds, patients benefiting from this new compound will no longer be able to get a drug that is treating their cancer. This crucial link is not funded by the charity model.

There is no shortage of positive powerful human energy working toward new breakthrough treatments for incurable diseases. We express this energy in our many actions: purchasing items with pink ribbons, walking with the name of a loved one on our back or attending a fundraising event. These micro-actions are making a difference, but only to raise awareness and to fund the first step of the drug development process.

Right now, for many biotech companies, the critical steps following awareness are in a no-man’s-land for funding. If this were in the education field, it would be equivalent to funding our kindergartens and primary schools, but leaving middle schools and high schools to fend for themselves.

Can we move beyond the current monopoly of funding? Can we extend the scope and nature of our grassroots initiatives and not-for-profits? Do we have the courage and vision to create these new models?

I don’t know what this new drug development paradigm will look like, however, I do believe the 21st century is reshaping the landscape of giving because of internet based connectivity. Consequent social awareness makes this new paradigm a very real possibility.


Azita Ardakani is the founder of Lovesocial: a social media agency that works with causes and corporations to utilize the power of social media to affect change, while being effective and authentic in online communication.

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