VOZ Advisors

10/18/2022

Racial and ethnic diversity in clinical trial participation advances health equity. Join VOZ Advisors and Clarivate on 10/25 for a webinar as experts discuss the steps that the biomedical community can take to further equity in the development of critical treatments. Register here: https://bit.ly/3SdTnZf

10/10/2022

Join us in congratulating PPMD and the entire Dystrophinopathy community, for the updated Community Led Guidance submitted to the FDA on September 30th. VOZ was honored to work on this update, as well as the original Guidance in 2014 -- we are grateful to PPMD and the multiple stakeholders involved for the trust and confidence placed on us.

This update was critical given advancements made in understanding the patient experience, care, and research for individuals living with Dystrophinopathy. More than 100 stakeholders, including patients, caregivers, clinicians, researchers, drug companies, genetic counselors, and regulatory experts were involved in this effort. It is hoped that the FDA will officially open a new docket for this revised community guidance to allow for board public attention and commentary.

Congratulations on this tremendous accomplishment!

An exciting update to the revised community-led Duchenne Guidance for FDA is that it has been officially submitted to the agency! As you know, this Community Draft Guidance will serve as an update to the...

09/15/2022

VERONICA TODARO JOINS VOZ ADVISORS AS PRESIDENT AND CEO

NEW YORK – September 13, 2022: VOZ Advisors is pleased to announce that Veronica Todaro has joined the firm as President and CEO. Ms. Todaro succeeds Ms. Ellen Coleman who will serve as President Emeritus, Senior Advisor.

Veronica “Ronnie” Todaro was previously Executive Vice President and Chief Operating Officer of the Parkinson’s Foundation where she led the development and ex*****on of strategy and operations, ensuring the alignment of the organization’s objectives with the needs and priorities of people living with Parkinson’s disease. Prior to her role as EVP, COO, Ms. Todaro held the role of Vice President of National Programs at the foundation, where for more than a decade she pioneered and drove a portfolio of patient engagement initiatives that continue to serve as models today.

“We are delighted to welcome Ronnie to VOZ. Her dynamic personality and extensive track record in patient advocacy and engagement make her the perfect fit for leading our organization through its next stage of growth,” commented Cláudia Hirawat, Executive Chair of VOZ Advisors, adding, “I also want to extend my gratitude to Ellen Coleman for her stellar performance as President and CEO these last four years. We are honored that in her new capacity, Ellen will continue to further the work of VOZ as President Emeritus and Senior Advisor.”

Ms. Todaro is a recognized leader in the fields of patient engagement and advocacy. She has been an invited speaker at national and international conferences, including those hosted by the National Institutes of Health, US Food and Drug Administration, Society for Clinical Trials, and the World Parkinson Congress. As a founding member of Patient Focused Medicines Development (PFMD), she has served on its Board and Executive Committee, as well as Chair of the Patient Leadership Council and on the Executive Committee for the Clinical Trials Transformation Initiative (CTTI). She has also been a member of the Patient Engagement Advisory Panel for the Patient-Centered Outcomes Research Institute (PCORI), the Advisory Committee of North America, and the Program Committee for the Global Annual Meeting of the Drug Information Association.

“VOZ Advisors leads the field in the authentic engagement of patients and care partners in medicines development,” said Ms. Todaro. “I am honored to lead the firm and work alongside the creative and experienced VOZ team, particularly at a time when there are tremendous opportunities to build innovative partnerships that advance therapies that matter most to patients and to do so with an intentional focus on health equity.”

Ms. Todaro was selected in a comprehensive process with the support of CNR Search.


About VOZ Advisors, Inc.
VOZ Advisors is a leading consultant to global pharmaceutical and biotech companies, creating solutions through innovative and effective partnerships with patients, care partners, patient organizations, and professional groups. VOZ applies its focus in patient advocacy and engagement, the power of its networks, decades of experience, ingenuity, and expertise to help clients build strategic and productive external stakeholder relations that align with business goals. To learn more, please visit www.vozadvisors.com.

Contact: Misha Mathur
mmathur@vozadvisors.com
+1 212 620 2770

VOZ Advisors is a leading consultant to global pharmaceutical and biotech companies, creating solutions through innovative and effective partnerships with patients, care partners, patient organizations, and professional groups.

06/27/2022

The Rare Disease Diversity Coalition is hosting a webinar, "Know Your Options: Careers in Clinical Trial Research", on Tuesday, June 28, 2022, at 1:00PM EST. This event, which is the first in a series aimed at increasing the number of clinical trialists of color, will feature an all-star panel of clinical research professionals who will speak about their respective career paths and the importance of cultivating diversity in every aspect of clinical trial research. https://bit.ly/3OPgrw5

12/17/2021

It is fair to say that we hoped for an easier 2021 when compared to 2020. We did, indeed, see significant improvements--the launch of vaccines, children returning to schools, and opportunities to see loved ones in person. But 2021 still brought plenty of challenges, in particular regarding uncertainty. As we close the year, we are concerned over omicron and what challenges this new variant may bring. What other strains will we encounter? Will the pandemic ever come to an end?

In facing uncertainty, we must hold fast to the lessons learned since 2020. Most importantly: we learned that we are more resilient than we knew. This pandemic has resulted in unacceptable losses, but we have made significant progress. We have become stronger and more appreciative of what truly matters in life.

Our wishes for 2022 are that we continue to be strong and . We hope that we continue to prioritize our values, to practice self-care, compassion, and to be present in the lives we touch.

Here is wishing you hope as we enter the New Year. No uncertainty can conquer our spirit. No challenge can destroy our dreams. We are infinite in our ability to grow.

May 2022 be your best year yet.

by Claudia Hirawat.

12/03/2021

With Thanksgiving behind us and the year-end holiday season approaching, is more present in our thoughts and conversations. Our experience with a global pandemic and the uncertainty it has brought to our lives has in some ways led to an increased appreciation for being healthy. What may be missed, however, is in the role that gratitude can—and does—play in actually supporting .

The holiday spirit of gratitude may be fleeting, but many studies have demonstrated that a daily gratitude practice can increase happiness as well as physical health. Choosing to be grateful improves sleep, boosts immunity, and decreases the risk of disease.

As we move through the holiday season and into the New Year, we will do well to continue our exploration of gratitude, and to embrace a daily practice of appreciating the positive aspects of our life. Doing so can create a positive feedback loop for health and well-being. https://bit.ly/3Ihq3Nz

The following articles describe simple exercises for practicing daily gratitude:

How to Practice Gratitude: https://www.mindful.org/an-introduction-to-mindful-gratitude/

13 Most Popular Gratitude Exercises & Activities: https://positivepsychology.com/gratitude-exercises/

by Jessica Cerullo Merrill.

11/19/2021

The idea of customizing medical treatment to the patient is ancient, but only in recent years has the concept become more of a reality. This is particularly true in oncology. Indeed, the European Cancer Patient Coalition * has designated November as ‘Personalized Medicine Awareness Month’. In the cancer arena, personalized medicine (also referred to as precision medicine, precision oncology, and/or targeted treatment), uses molecular profiling to identify and target specific genomic mutations in cancers. Increasingly, such therapies are being used across tumor types. Many companies have developed these therapies, and oncologists note the ability of such approaches to target specific mutations and potentially limit the side effects that often characterize other treatments. In 2020 alone, over 24 precision oncology drugs* received FDA approvals in a wide range of cancers.

Although has proved effective, many patients cannot access such treatments because their tumor was never tested for the relevant mutations. Many stakeholders across the healthcare landscape--including patients, insurers, and healthcare providers--are still unaware of personalized medicine and its potential benefits. Some doctors do not test for biomarkers because they don’t prescribe precision medicine. Some patients aren’t tested because such tests are not covered by their health plan. Even when testing is done, the results can be confusing to navigate for patients.

Hundreds of new personalized, targeted cancer therapies are in clinical development, and this influx of treatment options may help mitigate current barriers. Accelerating that process will have more patients benefitting from the vision of delivering the right drug to the right patient at the right time. ECPC’s campaign action toolkit is an excellent resource to learn more. https://bit.ly/3DrcOXD


*https://ecpc.org/
*https://bit.ly/3oIPC19

by David Tahari.

11/12/2021

By definition, a is diagnosed in a small number of people. In aggregate, however, more than 300 million people worldwide are living with a rare disease. Rare disease patients often embark on complex medical journeys without knowledge of medical teams, peer-to-peer connections, or adequate emotional support. Living with a rare disease means much more than symptom management — it involves grappling with feelings of isolation and anxiety. Through caring for a family member with a rare disease, I have witnessed first-hand the importance of providing patients with a platform to support others, communicate with the healthcare industry, and propel change in the rare disease space. Patient advocacy holds an unmeasurable power in helping patients regain control and autonomy within their lives. Our work at VOZ often involves rare diseases, and we know that patient engagement—talking directly with people impacted by the disease—results in enrichment of the drug discovery, development, and commercialization.

There are many definitions of , for example, Kristin Carman, director of PCORI, proposed a framework for engagement that can guide intentional and respectful and activation. She states that engagement must focus on direct patient care, occur on an organizational and governance level, and drive change at a . Through this framework patients can work with providers to help guide health decisions, incorporate their experiences into pharmaceutical and hospital designs/developments, and impact policies and laws that transform . Whether through this framework or another, many organizations are actively including patients in their conversations and recognizing the immense value of their voices. Here at VOZ, we focus on involving patients at each step of the drug development continuum, supporting our vision that all medical products should benefit from the perspective of patients.

Patients are speaking, so let us listen. https://bit.ly/2Yn3Bk0

by Mira Patel.

11/05/2021

Women’s rights are under attack in the US. The latest example is the passage of Texas Senate Bill 8, banning abortion as early as six weeks and allowing citizens to sue abortion providers who violate the law. This sets the stage for another Supreme Court challenge to Roe v Wade, the precedent for abortion cases since 1973. The majority conservative Court has already caused great panic in the women’s health and community by refusing to block this unconstitutional law.

is highly debated, but one thing should not be controversial: women have the right to have a voice in their own healthcare. They deserve control over their lives and must be allowed to make independent decisions. Reproductive rights and associated decisions are an important part of healthcare. Forced pregnancies and unsafe abortions can lead to such negative outcomes as self-inflicted harm, deteriorating mental health, and financial hardship. A woman’s right to choose is an exercise of her right to health and privacy.

This new law—and others that attack the rights of women—demonstrates the importance of everyone standing up for equal rights for women. One step is to support legislation such as the Women’s Health Protection Act, to preserve autonomy and health. https://bit.ly/2ZYgbqG

by Nicole Hajek, MPH.

10/29/2021

Last week I had the honor and pleasure to facilitate a discussion with eight women diagnosed with HER2 positive (HER2+) metastatic breast cancer (MBC). As each shared her unique story, I reflected on both how far we have come since the first targeted treatment for HER2+ MBC was approved in 1998, and the progress still needed. Now, more than 20 years since this monumental innovation, multiple anti-HER2 targeted therapies are available, including novel agents and combination therapies. Still, no cure exists, and for many the impact of treatment on quality of life is daunting. New relevant biomarkers such as PIK3CA and PD-L1 have been identified and drugs developed to target these markers, yet many people are unaware of these biomarkers, and testing is not routinely offered. Researchers continue to seek solutions – more than 300 trials are currently underway for MBC – yet as we heard from our patient advisors, trials are challenging to find and interpret. As we close out Breast Cancer Awareness Month 2021, let’s celebrate our progress and put our energies towards closing the gaps where we are able.

Check out https://bit.ly/3GeoFKE for a directory of MBC clinical trials and https://bit.ly/3pALGRQ for notable updates in breast cancer research from the 2021 ASCO meeting.

10/22/2021

Every year in October, pink ribbons make an appearance as some patient organizations and many companies promote . Women living with breast cancer, survivors, and families who participate in walks and other events are grateful for the sense of community this brings, as well as the opportunity to support awareness and raise funds for research. But this sentiment is not universal.

The recent New York Times article “For some breast cancer survivors, October is the cruelest month” explains how, for some, breast cancer awareness month can have a re-traumatizing effect. For others, the marketing images of happy people participating in fun-runs contrast starkly with their reality of living with metastatic disease. The piece provides advice for survivors to get through the month and how friends and family can be supportive.

At VOZ, we often work with our clients to amplify various awareness days. For me, the article underscored the importance of being informed by a variety of patient perspectives, and understanding that no one approach will work for every person. We need to constantly push ourselves to ask, “Where are we missing the mark? What should we be doing to support you?”

by Margaret Arbogast.

10/15/2021

I recently spoke with a mother of three who is living with type 2 diabetes. She has been living with the condition for two years, and the most recent A1C value she knew was measured over a year ago. She missed the last two appointments with her provider, was inconsistent with her glucose monitoring, and for a long time misunderstood what a healthy target blood sugar level was. Her inability to make informed health decisions is a clear indication of low health literacy.

October is . My interaction was a timely reminder that 90 million Americans lack the ability to obtain, process, understand, and use health information in a way that is necessary for making appropriate care-related decisions.

Health literacy is not a reflection of intelligence, but of barriers associated with social determinants of health. This might include lack of equal access to health education, disparities related to income, institutional racism, limited health care availability in rural communities, and much more.

The National Action Plan to Improve Health Literacy was developed to create a society in which individuals feel empowered to engage effectively with their disease management and self-care. Here are some ways you can get involved in your own community: https://bit.ly/3mGy7gH

by Nadia Louri!