WCG: Advancing Patient Advocacy

It’s always been about the patient. It always will be.

We know this is true: The patient journey must be central to the drug-development process. Not an afterthought, not a marketing gimmick, but an integral element from protocol design to marketing.

That’s fundamental to our approach to clinical trials.

For decades, WCG has advanced the protection and ethical treatment of patients who participate in clinical trials. As we’ve grown, we’ve expanded our service offerings in ways that support and engage patients.

WCG provides a wide variety of services to drug developers and hospitals to make sure clinical trials are, first and foremost, of value to patients. From the beginning, WCG has led a charge to standardize cumbersome IRB processes, so that IRB review of a clinical trial is shortened by weeks or months.

Services that improve treatment development speed and safety

Today, WCG offers an array of services that helps companies conduct safer, more efficient trials. Experienced Enrollment Assistants engage patients throughout the process, answering questions about what’s involved in participating in clinical research. Certified genetic counselors give access to timely information about a diagnosis.

It’s all in service of a shared mission. Patients and Sponsors alike want treatments developed quickly and safely. Trial planners and investigators seek the best ways to incorporate the patient voice and run trials that are less burdensome. Patients need to better understand their condition and their options. All want more treatments for unmet medical needs developed rapidly and safely.

WCG has services and solutions that help with each aspect. It comes down to this: None of us wants to see progressive disease continue to diminish the quality of life.

But when medications aren’t available, it can be easy for patients to lose hope. Too often, doctors must tell anxious parents or patients, “There is no cure, and no treatment.”

This must change. Recognizing the need for change is the beginning of advocacy.

Being an advocate

One’s own health, or a family member’s health, is often the immediate motivation to advocate and try to make things better. It is most impressive to see the lengths to which friends and family members will go to protect loved ones from disease. 

But just what is patient advocacy? Patient advocacy means many things:

• If you help someone find the best treatment, adapt to physical limitations, attend school or access buildings, aircraft or taxis, you are an advocate.
• If you sit by a patient’s bedside and keep the person company, or remind medical care teams of a patient’s preferences, you are being an advocate.
• If you are a parent educating teachers about your child’s condition, you are advocating.
• If you are an author or an artist sharing your stories and talents, you are an advocate.
• If you go online and help your friend find a clinical trial, you are advocating.
• If you join a group and see what you can learn to help yourself or someone you know, then you are advocating.
• If you and other members of the group agree to share your medical information to support the development of new medications, you are advocating.
• If you speak to your legislators to support them as they strive to modernize regulations to catch up with modern science, you are advocating.  

Collective efforts of patients in the form of “patient advocacy” have brought about major improvements in the way we develop new medicines. This does not happen quickly, but when viewed over the course of years it becomes clear.

Global advocacy, one country at a time

Clinical trials themselves are frequently global, and it isn’t unusual for patients to join voices across borders and attend conferences, participate in clinical trials and make friends with like-minded people facing similar challenges.

Many advocacy organizations focus on one country, but they have counterparts across the world. Why the single-country focus? It has a lot to do with language and culture and the need to communicate easily about a complex and personal topic.

There’s also another important reason: Many advocacy groups are focused on development of new treatments and cures, and such work is regulated by government agencies. So U.S. groups often organize patients to speak to their government representatives on the state and federal levels, to the FDA, etc.

Advocacy in the halls of power

Patients and their advocates can–and do!–use their collective voice to promote transformation through the legislative process. It can be a protracted process, but it can yield dramatic changes in policy that speed drug development and enhance safety.

It’s surprisingly easy to contact your members of Congress and to ask them to support a bill. In fact, you can do it online. Go to www.house.gov or www.senate.gov and, at the top of the page, key in your zip code to find the names of your senators or congressional representative. Follow the instructions and write your message.

Click here to learn more about legislative advocacy and which bills need your support.

Leaps and bounds

The science continues to advance, and patient advocacy has played a tremendous role in turning pure science into practical tools.

Patient voices raised in unison and careful cross-stakeholder collaboration have led to new laws and regulations that have increased the number of new treatments.  

Consider this: AIDS and rare disease advocates brought about the 1983 Orphan Drug Act that has increased the rate at which we can develop new treatments for rare diseases. In the decade prior to that there were only 70 FDA-approved treatments for rare diseases. Now, largely because of that and related initiatives, we have over 500 FDA-approved treatments for rare diseases.

With roughly 7,000 rare disease, it’s clear we still have far to go. But raising our voices together will bring about change. We just need to do it.

At WCG, we’ll be right there with you, amplifying your voice and helping turn research into cures.