• Facebook
  • Rss
  • Twitter
  • Youtube
  • Store
  • Donate
  • 0Shopping Cart
NCCS - National Coalition for Cancer Survivorship
  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • COVID-19 Resources for Cancer Survivors
    • Order Our Resources
  • News
    • Cancer Convos Podcast
  • Events
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us
  • Search
  • Menu Menu

Year-End MATCH (DEADLINE Dec 31): Donate & Make a Difference | Donate

Laura Holmes Haddad 682px

Ask Your Oncologist About Clinical Drug Trials

January 23, 2017/in Cancer Policy Blog Access to Care, Clinical Trials NCCS News /by actualize
Laura Holmes Haddad

Laura Holmes Haddad

Post by Laura Holmes Haddad
Stage IV Inflammatory Breast Cancer Survivor
If you had asked me in December 2012 if I would ever participate in a clinical drug trial, my answer would have been a resounding, “No.” The very word “trial” scared me off; I didn’t want to be a guinea pig, a test subject. I wanted proven medicine.

I was just about to begin chemotherapy to treat Stage IV inflammatory breast cancer. I had consulted three medical centers, and the words “clinical trial” were not mentioned, until suddenly they were. One month and two rounds of chemotherapy had failed, and I had no other option: I was 37, I had two kids under the age of five, and the tumor in my left breast was growing, and an oncologist at University of California, San Francisco told me a clinical trial would be the next step (which I found out later meant my only option). My “no” immediately turned to “yes.” But I didn’t know exactly what the term meant, what a trial entailed, or just how complicated it is to access clinical drug trials.

In February 2013, I became Trial Subject #985. I was accepted onto a Phase II non-placebo, non-randomized clinical drug trial for a PARP-inhibitor drug. The unfortunate part for me was that the closest medical center administering my particular trial was about 400 miles south of our home. Every week for six months I had to travel to another hospital to receive treatment. This was stressful, to put it mildly; the financial and emotional toll was high, but ultimately worth it. The drug was working to shrink my tumor, and I then returned to UCSF for surgeries and then radiation therapy at my local cancer center. Since August 2013, I am NED (no evidence of disease), another word for remission.

My family and I were quickly given a crash course in clinical drug trials in the U.S., and this is what we learned:

  • Your medical provider (oncologist) must help you gain access to a clinical drug trial. He or she petitions the drug company (the “sponsor” of the trial) to get their patient (you) accepted into the trial. Your oncologist can access databases that list open clinical drug trials in the U.S., but you and your caregivers can do your own research as well. A good place to start is the National Cancer Institute (NCI) website: Cancer.gov: Find NCI-Supported Clinical Trials
  • There are strict rules around participating in a clinical drug trial (called protocols) and they absolutely must be followed. All of the rules are in the documents you will sign before you begin the trial. That said, you are volunteering for this treatment and are free to leave the trial at any time.
  • Don’t let finances prevent you from pursuing a clinical trial option. Under the ACA, insurance companies must cover the routine costs of an in-network provider associated with an approved clinical trial. There are many, many resources in the U.S. that can help with financial issues, including the cost of traveling for treatment.
  • I was afraid of the unknown. Once I had more information—reliable, trustworthy information—I understood the risks and benefits. I had to put fear aside and look at the facts. A good place for basic trial information is the American Society of Clinical Oncology (ASCO) website: Cancer.net | Clinical Trials

There is no doubt that I am alive today due to the drug trial I participated in, but it was more than getting access to the drug. Had I not had the medical support and family support to help me navigate this complicated aspect of cancer care, I would not have survived. As cancer patients, we need information and support in order to make the best decisions about our treatment. Don’t stop seeking information and don’t stop asking questions. It’s your cancer, and your body.

# # #

About the Author

Laura Holmes Haddad is a writer and Stage IV inflammatory breast cancer survivor from California. Her book This is Cancer: Everything You Need to Know, from the Waiting Room to the Bedroom was published In October 2016.

The views & opinions expressed in any guest post featured on our site are those of the guest speaker and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.


Tags: ASCO, cancer care, clinical trials, Guest Post, Laura Haddad Holmes, NCI
Share this entry
  • Share on Facebook
  • Share on Twitter
https://canceradvocacy.org/wp-content/uploads/2017/01/Laura-Holmes-Haddad-682px.jpg 682 1024 actualize https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png actualize2017-01-23 15:28:382020-12-01 11:25:51Ask Your Oncologist About Clinical Drug Trials
You might also like
Fotolia 23428619 S e1461260836640 NCCS Statement on CBO Report of Senate’s “Better Care Reconciliation Act”
NCCS Communications Director The AHCA’s 52 Million Uninsured Is Not “Freedom”
NCCS Starburst Thumbnail WCOE: Traveling for Treatment, Bipartisan Cancer Policy, Some Tumors Evade Targeted Therapy, Treatment vs Hype, Clinical Trials Info
King Video Post: Advocate Marlene King Discusses Communicating End-of-Life Preferences and Quality of Life
NCCS Starburst Thumbnail WCOE: World Cancer Day, “Dying Shouldn’t Be So Brutal,” and More on Precision Medicine
NCCS Starburst Thumbnail The New Medicare Oncology Care Model Will Improve Quality of Care for Cancer Patients
New York Times Thumbnail Clifton Leaf Opinion Piece in NY Times “Do Clinical Trials Work?”
NCCS Policy Comments Capitol NCCS Joins Cancer Leadership Council to Oppose Right to Try Legislation in the House

Latest News

HHS Humphrey bldg 1200

NCCS, Cancer Groups Urge CMS to Withdraw Most Favored Nation (MFN) Medicare Part B Rule That Will Harm Patients and Reduce Access to Care

December 22, 2020
The National Coalition for Cancer Survivorship (NCCS) joined other member organizations…
Read more
https://canceradvocacy.org/wp-content/uploads/2017/10/HHS-Humphrey-bldg-1200.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2020-12-22 20:27:262021-01-04 21:38:15NCCS, Cancer Groups Urge CMS to Withdraw Most Favored Nation (MFN) Medicare Part B Rule That Will Harm Patients and Reduce Access to Care
NCCS Letter to HHS

NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients

December 9, 2020
The National Coalition for Cancer Survivorship (NCCS) recently submitted comments…
Read more
https://canceradvocacy.org/wp-content/uploads/HHS-Humphrey-bldg-1200-1030x515-1.jpg 515 1030 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2020-12-09 17:30:502020-12-10 08:22:55NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients
HHS Humphrey bldg 1200

NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients

December 3, 2020
The National Coalition for Cancer Survivorship (NCCS) opposes the Most Favored Nation…
Read more
https://canceradvocacy.org/wp-content/uploads/HHS-Humphrey-bldg-1200.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2020-12-03 21:26:462020-12-03 21:28:06NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients

Take Action

Stovall Award

The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.

Join CPAT

The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

Share Your Story

NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.

STAY CONNECTED

Together we can improve cancer care for survivors! Sign up to be the first to know about cancer policy issues and ways to take action

  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • COVID-19 Resources for Cancer Survivors
    • Order Our Resources
  • News
    • Cancer Convos Podcast
  • Events
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us

National Coalition for Cancer Survivorship
8455 Colesville Road  |  Suite 930  |  Silver Spring, MD 20910
877-NCCS-YES  |  info@canceradvocacy.org
Privacy Policy  |  Terms and Conditions

Copyright © 1995-2021 by the National Coalition for Cancer Survivorship
National Coalition for Cancer Survivorship, NCCS, Cancer Survival Toolbox, and related Logos are registered in the United States as trademarks of the National Coalition for Cancer Survivorship.

What Caught Our Eye: ACA Repeal Debate, the FDA’s Oncology Center of Excellence,... NCCS Starburst 250px white house400by400 ACA Update | January 24, 2017: The Cassidy-Collins Plan & ACA Executive...
Scroll to top

Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute