An Oncology Equity Summit and #ASCO24 Connections

On Monday June 3, 2024,  I had the opportunity to attend the Pfizer Oncology Health Care Equity Summit: Models for Collaboration and Community Action by Conquer Cancer's EveryGrant®. 

After being welcomed by Dr Katherine Reeder-Hayes, we heard from Dr Aida Habtezion, Chief Medical Officer of Pfizer. After reviewing the representation by race and ethnicity in clinical trials in the US, Dr Habtezion highlighted Pfizers committment to health equity in oncology. 

 

Next, a panel of presenters including advocate Sharon Rivera-Sanchez, shared their research and experience reaching underrepresented patients. 

Brian Rivers, PhD, MPH (Morehouse School of Medicine) spoke on the Deep South Community Health Advocates Network . The Network recruits and trains lay advocates/navigators as community health workers to disseminate cancer information on risk reduction, screening, survivorship and clinical trial participation. He also spoke on a project to improve access to primary care and promote education and preventive screenings for prostate cancer among rural African American men.

Shoshana Rosenberg, ScD, MPH (Weill Cornell Medical College) spoke on the unmet psychosocial needs among adults with metastatic breast cancer in New York City. She described the intervention RAISE,which uses an employment screening tool to assist  with the employment challenges experienced by metastatic  breast cancer patients treated at NYP-Weill Cornell Medicine (Manhattan) and Brooklyn Methodist Hospital. 

Kamran Ansari, MS Pfizer Oncology division spoke on Pfizer's approach to clinical trial diversity

Sharon Rivera-Sanchez, patient advocate and founder of Trials of Color spoke on the barriers to participation in clinical trials such as logistic and financial barriers, lack of awareness of trials, eligibility criteria, mistrust and the complexity of clinical trial platforms. Solutions include education, building relationships, simplifying enrollment, inclusive eligibility, and child care support. Her final remark needs highlighting!

Kenneth W. Merrell, MD, Medical Director Global Bridges, shared  the mission of Global Bridges to mobilize a global network of healthcare professionals and organizations dedicated to advancing effective diagnosis and treatment through medical education. The progam has training 50,000 Health Care Providers in 85 countries. They have provided 17 grants in oncology in the 2024-2026 cycle in Africa. 

Yanin Chavarri Guerra, MD, MSc Instituto Nacional de Ciencias Medicas y Nutricion Salvador Zubriran , Mexico spoke on the social determinants of health and disparities in cancer care for patients with metastatic breast cancer in Mexico. Patients were recruited from 3 hospitals. The barriers related to social determinants of health in patients with metastatic breast cancer may be addressed by system-level interventions.

Salvatore Alesci, MD, PhD, National Minority Quality Forum (NMQF) shared the NMQF vision to achieve a just and fair American health system that insures equitable access to optimal care. 

Andrew E. Chapman, DO, FACP, FCPP Director of the Sidney Kimmel Cancer Center at Jefferson concluded the panel discussion . He discussed how the ACES model ( Access and Care Engagement Support) can transform cancer care at the cancer center's main and regional sites.

One of the best parts of attending ASCO are the connections and reconnections I make with other advocates and researchers. This year I was able to catch a few of those connections in photos. Great times with  Barbara, Helen, Stacey, Stephanie, Ting Ting, and Annie.  

But there were also the important connections with clinicians and researchers I have worked with through the years on developing trials, the #gyncsm community, ASCO or the NCI and Cancer Hope Network. It was wonderful meeting Drs Markham and Samantha Schrager (Cancer Hope Network),  Cervical Cancer Advocate Linda Ryan and Dr Kohn, as well as Dr Dellinger, Lou, and Dizon.

I also got to reconnect with Dr Ophira Ginsburg at the President's Reception. We first met at the ASCO Annual Meeting in 2015. 

 

This post completes my reporting from #ASCO24. There will be a bit of a break posting on this blog and  from advocacy over the summer but September - Gyn Cancer Awareness month is right around the corner. 

Dee

Every Day is a Blessing! I was blessed to have not only attended but presented at ASCO this year. 

ASCO 2015 Part I : Connections

One of the most memorable parts of my attendance at the ASCO Annual Meeting was meeting other patient advocates, ovarian cancer organization representatives and researchers and physicians.

It all began on Friday night when I attended the Focus on Research Scholar Dinner. I was a Focus on Research Scholar in 2011.  It was at that time that I first met Mary Lou Smith and Elda Rainey, Research Advocacy Network founders. It was so nice to catch up with both of them and I was happy to see Alumni Scholars from 2011 at the dinner continuing their advocacy. The class of scholars this year included breast, ovarian, kidney cancers and and advocate for those with brain tumors. The dinner was delicious and it was a special night as we all honored Mary Lou for the Partners in Progress ASCO Award she would be receiving.



Before I left for ASCO I reached out to a few of the other advocates to see if we could meet. I was so happy to meet Janet Daily-Freeman ( #lcsm), Georgia Hurst (@shewithLynch) and Dan Dubin( @AliveandKickn ) in the enormous Exhibit Hall.

Georgia Hurst, Dan Durbin and I meet at the AmbryGenetics booth.

On Saturday evening, ASCO held a "Tweet Up" for the health care professionals  as well as advocates and others tweeting from the meeting.  I was live tweeting from the meeting for the #gyncsm community and this event was a must do on my calendar. I am so happy that I was able to meet so many of the doctors and researchers I interact with on twitter. After a year and a half working with them on  #gyncsm chats,  I finally got to meet health care moderators, Dr Don Dizon and Dr. Merry Markham and Dr Katz whose support of #gyncsm is so appreciated.  Also in attendance were Dr Attai, #bcsm co-moderator, whose warm welcome of me to the #bcsm chat planted the seed to create a chat for gynecologic cancer survivors.

Finally meeting Drs. Markham and Dizon, #gyncsm health care moderators

Late Sunday morning, I met oncologist, Ophira Ginsberg. We also follow each other on Twitter and met through the #gyncsm chat. Ophira's work has concentrated on ways to improve global cancer control and equality in women's healthcare. She has initiated a program of population intervention  and training in Vietnam, Bangladesh, and sub-Saharan Africa. I know that the impact of ovarian cancer as well as other gynecologic cancers is a global problem. There are countries that have 0 CT machines , yes,  you read that correctly ZERO machines.( I think of what might have happened if a CT machine did not pick up my recurrence.) In the future I plan on sharing the work that Ophira and others are doing to improve the healthcare of women with gynecologic cancers worldwide.   

Throughout the meeting I had the opportunity to talk not only to advocates from the US but also advocates from Egypt, Brazil, Nigeria and Japan. Our goals and motivations regardless of disease site or geographic location were the same: to raise awareness, to increase research to find screening tests, to develop more effective treatments and to support survivors. We just have to tailor those goals to our country’s needs. 

I had the opportunity to speak to researchers and oncologists from France, Canada, Netherlands, Belgium and Italy. The poster sessions were the best time to have more in depth conversations with the presenters about their work. I was so happy to see trials designed to included participants and sites in various countries. 

I introduced myself and handed out the #gyncsm business card to many oncologists and researchers at the meeting. But what a nice surprise when Roisin O'Cearbhaill, a researcher from Memorial Sloan Kettering came up to me and said " Hello , I met you at the Kaleidoscope of Hope Dinner. I am so glad to see you at the meeting". 

Yes, advocates are welcome at medical conferences.  

Dee

Every Day is a Blessing  

ASCO 2015 - Connections and Knowledge

Last night I returned home from attending the ASCO Annual Meeting in Chicago. The theme of the 2015 meeting was Illumination and Innovation. As a patient advocate who attended the largest oncology meeting in the world ( 30,000+ people) my theme for the meeting would be Connections and Knowledge.

Over the next week or so I will write a series of posts about my experience and the knowledge I learned. The topics will be:

Connections: 
Patient Advocates and Physicians
Hashtag Communities

Knowledge: 
Genomics
Immunotherapy
Big Data (CancerLINQ)
Value / Cost of treatments
Clinical Trials (Patient Reported Outcomes)
Survivorship

Please be patient as I gather the enormous amount of information I heard and posters I saw over the five days of the meeting and condense it into a reasonable length post. This will not be an easy task but an important one because what I heard gave me hope.

Dee
Every Day is a Blessing!