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Points Covered and Resources:

  • Bob Douglass’ story

  • My experience

  • AOWAC Outreach Efforts

  • Challenge with research quest

  • Stats on lymphoma cases

  • VA AO Registry

  • VA Cancer Tumor Stats – not cross-referenced with AO Reg.

  • Previous VA Study Findings – inadequate

  • Clark Brooks Investigative Reporter

  • GAO Report

  • Hatfield Group Findings

  • Association of Birth Defects Reports

  • International Research Study Reports

  • Recent New Findings of service-connected diseases and birth defects

  • Mortality Rates of Vietnam Veterans

  • More Stats

  • Request

  • Conclusion

Agent Orange Widows Awareness Coalition
PO Box 92131, Long Beach, CA  90809-2131  /  562-421-4640

August 2000

To: The National Institute of Environmental Health Sciences and Members of the Ad  Hoc Panel on Dioxin Exposure in Vietnam:

Dear Distinguished Members of the Panel,

It is with great honor and humility that I speak to you today on behalf of my husband, Bob Douglass, the Agent Orange Widows Awareness Coalition (AOWAC), Vietnam Veterans and their family members across the nation.  I am testifying before you today to share my experiences and research and respectfully request your support for expansion of the Veterans Health Administration research studies here in the United States, as well as abroad.

I am Genevieve Douglass, the widow of Vietnam Veteran, Bob Douglass. In June 1999,

I co-founded the Agent Orange Widows Awareness Coalition (AOWAC), along with Karen Olszewski, the widow of Vietnam Veteran Robert Olszewski.  Both our husbands died of service-connected diseases from exposure to Agent Orange and related compounds used when serving our country in Vietnam.  In addition, I am California Representative for VWIN, Veteran Widows International Network, and a member of the Lymphoma Research Foundation of America.

Karen and I met at Long Beach Stand Down 1999, an outreach to homeless veterans.  We decided we needed to share our experiences and the important information we knew about, get more educated on the issues and launch an organization called the Agent Orange Widows Awareness Coalition.  It is a national awareness campaign effort to educated Veterans, their family members and the medical community.

We have talked with many other Vietnam Veterans, their widows and family members across the nation who are hurting and in the dark or available resources.  We want to work together and build partnerships with the VA, our government representatives and officials in better serving our Veterans and military services.

I bring to you the stories of my husband, Bob, and others, who suffer and die from lymphoma and other service-connected diseases.  Bob’s non-Hodgkin’s lymphoma was service-connected and caused from exposure to herbicides, such as Agent Orange, used in Vietnam over 30 years ago.

Let me begin with the brief history about Bob and our experience with lymphoma. Bob served in the Army from 1967-1970.  From 1969-1970, he served in Vietnam for 14 months, as a cook in a base camp near Da Nang.

We met after his return to the United States in 1970.  We married that same year. Bob worked for Los Angeles County for 27 years, with most of his career in financial management for health services. We were married for 27 years and raised two sons, Shawn and Daniel.

After celebrating our 25th Wedding Anniversary and having finished raising our two sons, Shawn and Daniel, we talked about what we would do with the rest of our lives together.  We were still young and had the freedom to choose to go wherever our dreams would take us.

The very next year while Bob was on his way to a chiropractor appointment, he discovered a small lump on the side of his neck.  His chiropractor told him to get it checked right away.  So, an appointment was made with an Ear, Nose and Throat Specialist, and then a biopsy was performed within two weeks.   Within this time frame, the lump had grown so fast that it blocked his trachea, preventing Bob from eating solid food.  He was diagnosed Sept 3rd, 1997 with lymphoma.  He was on a liquid diet, lost 25 pounds and started loosing his voice all in the first month.  This type of lymphoma is very aggressive.

We were told he was young and would most likely respond to treatment, giving us the impression that everything would be OK.  At this time our youngest son, Daniel, was in the middle of boot camp at USMC San Diego. He was determined to be in a leadership position and was responsible as a Squad Leader.  We did not want to upset his goals and plans in the Marine Corp, so we chose to not notify him until he graduated from boot camp.

We had Kaiser Health coverage.  In trying to figure out where this disease could have originated, we vaguely remembered stories of disease possibly related to Agent Orange.  You see, Bob was a very healthy man, rarely ill with a flu or cold.  So, we specifically asked our oncologist if there was at all a connection to Vietnam service and Agent Orange that they knew of.  They said, “No, they were not aware of any connection.” 

We proceeded with the recommended treatment of chemotherapy and radiation for the next eight months.  Bob did respond and the tumor was shrunk to a mere trace of scar tissue.  Towards the end of May 1998, Bob was told he was in remission and given a clean bill of health, but would be monitored regularly through blood tests. 

In July of 1998, our youngest son, Cpl. Daniel Douglass, was preparing to marry his high school sweetheart.  Bob was doing well; we thought we had won the cancer war.  We all enjoyed a wonderful wedding.  But, the next month, August 1998, Bob started having discomfort in his stomach area.  The next thing we knew, he was re-diagnosed with a return of non-Hodgkin’s lymphoma, only this time in his liver.  It was very aggressive.  He previously had a clear gallium and liver scan the end of May and now, he had three tumors of significant size in three different areas of his liver, thereby eliminating the possibility of liver surgery.

A more aggressive treatment of chemotherapy was administered.  Bob was very brave, with a positive attitude and faith in God to help sustain all of us.  We decided to go for a second opinion on treatment.  So, we went to UCLA Medical Research Center.  There they confirmed diagnosis and the treatment prescribed by Kaiser.  The goal was to get Bob as close to remission as possible, and then, perform a stem cell transplant for long-term results.  Again, we specifically asked these research doctors at UCLA if they knew of any possible connection to Vietnam service, Agent Orange and lymphoma.  The answer they gave was a shrug of the shoulders and a “No” response.  I have it on tape from our recorded appointment discussion. 

So, we proceeded with the recommended high-dose chemotherapy treatment.  Now, we were now in contact with the Lymphoma Research Foundation of America, (LRFA), through internet cancer research.  For some reason, I asked the question again of a LRFA representative, “Is lymphoma at all connected to Vietnam service, Agent Orange and Veterans?”  I finally found someone who knew.  The answer was, “Yes, and we have a two page summary report I can send you.”  After reading the report, we called the Long Beach VA Medical Center for assistance.  This was November 1998.

At the VA Hospital, we were referred to the regular registration process, and then to Agent Orange Registry. We waited six weeks to get an appointment for an Agent Orange clinical exam.  It was frustrating, because at the time, Bob was not responding to treatment.  Our Kaiser oncologist was stumped and very concerned.  She wanted to talk with a VA oncologist for another opinion about possible successful treatments for Vietnam Veterans with lymphoma.   We assumed the VA doctors would be the experts, with the most experience with lymphoma in Vietnam Veterans.  Only the Agent Orange exam was not with an oncologist, but a general practice physician. 

I called the oncology department to see if we could get in for a review of Bob’s case.  We made copies of his medical file and left it at the VA Long Beach for Dr. Slater’s review. Dr Slater is the head oncologist at VA Long Beach Medical Center.  We went to our appointment with the Agent Orange office.  Basically, we filled out paper work related to Bob’s Vietnam service; Bob saw the GP physician, (I was not allowed in with Bob during this doctors exam, which I find outrageous since Bob was so sick and could not focus or remember information at this time).  After he went for routine blood and chest x-ray work, his file was stamped Agent Orange and we were referred to the Disability Benefits office to file a claim.  We filed on January 6th, 1999.

A week later, we finally got an appointment with Dr. Slater, a VA oncologist, who reviewed Bob’s medical file and suggested the new treatment of Rituxin for Bob.  With that, we went back to Kaiser for Rituxan treatment the middle of January 1999.  It is not as harsh a treatment on the body as traditional chemotherapy, since it was an antibody that works on a different cellular level. It was suggested that Bob get Rituxan treatments once a week for a month, then re-scan for results.  If he showed improvement, he would receive one more series of treatments for another month.  That was our only hope.  And we did have hope.

Bob finished his first series of Rituxan and was getting ready to schedule a CT scan, when he took a fast downward spiral on February 10th.  He began to quickly lose motor control and became mentally confused.  I called Kaiser and told them I thought we needed hospice help. Nine days later, on February 19th at noon, Bob died a sudden, unexpected death, leaving me a widow and my two sons, Shawn and Daniel, fatherless.  Bob would never get to be a grandfather.  He would have been a great one, that’s for sure. Our sons and future grandchildren will miss out on life without Bob.  Now, I have had to experience widowhood and, at the same time, the empty nest season of my life, all alone without my loving husband, Bob.

Four months later, Bob’s VA disability was approved, but he only lived for 7 weeks after his claim was filed.  So, he only received one month of compensation for his eighteen month long illness.  Because our nation’s medical community does not know of the connection between lymphoma and all the other diseases related to Vietnam Veterans health risks and the birth defects and illnesses of their post-war children, our veterans and their families suffer needlessly.

Bob worked up until a week before his death just to keep his health coverage and some income for his family. This was needless as well.  If our medical communities had known the relationship of veterans and service-connected diseases, Bob could have gone on disability through his work and the VA, and still have provided for his family’s needs, but most importantly, he could have concentrated on his health recovery.  We also did not know how deadly this disease really is.  We would have made other priority decisions, spent more time together and would have been better prepared for the inevitable, Bob’s death from lymphoma.

Since Bob’s death, I traveled to Washington, DC in April of ’99, with the Lymphoma Research Foundation.  They hosted educational forums in DC and we met with Congressional and Senate Representatives to request additional lymphoma legislative language in the proposed budgets for the future and additional research funds and resources specifically for lymphoma.

I was the Vietnam story, sharing the now known information about the connection between lymphoma and Vietnam Veterans.  I discovered the lymphoma research experts did not know of this connection.  They were not doing research with Vietnam Veterans because they were unaware of the need.   When we know what causes a disease, like dioxin from the herbicides used in Vietnam, we can better find solutions in research and treatment.  The researchers know what to look for; dioxin exposure effects. 

In April 2000, I traveled again to Washington, DC for the Lymphoma Research Foundation to testify before the House Appropriations Sub-Committee on Veteran Affairs, HUD and Special Projects for the Presidential Budget 2000-2001.  Congressman Steve Horn of California introduced me before his colleagues. There I gave testimony about Bob’s and my experiences with lymphoma, shared statistics and requested additional funding for lymphoma research for Vietnam Veterans and their post-war children.

In previous VA studies, it seems that the VA was interested only in some statistical data research, not research for better treatment and solutions to curing lymphoma and the other diseases in Vietnam veterans and their post-war children.  The data is difficult to obtain and it produces insufficient results, even after thirty years since the war began.  In actuality the accurate and efficient data does not exist.  The VA staff does not have access to the data or the data collection system to answer the simple questions we ask.  This is not acceptable.

Our Veterans and their families deserve much better care and respect for serving our country in the preservation of freedom.   We must do more comprehensive and complete research with better results.  We have a generation of Veterans sick and dying across the nation, leaving family’s devastated in grief, despair and financial distress.  We must do better for them. 

It is my understanding that the percentage of Veterans who use the VA Medical system is only 25% nationwide.  The civilian medical community needs to be educated on the Veteran service-connected diseases.  Even the San Diego Navy Hospital Oncology Department did not know of the diseases associated to military service.  My mother-in-law, Bob’s mom, Irene Frey, volunteers at the San Diego Navy Oncology Department and is solely educating the Navy doctors about the service-connected diseases and giving them copies of the Agent Orange Reviews.  She is seventy-four years old.  This amazes me.

A National Awareness Campaign is necessary to reach Veterans and the entire national medical community to educate them about the medical health risks and benefit support that is available to those that qualify.  I understand the financial implications here.  But, I ask you to consider, if it was you or your child or grandchild with an illness associated to military service, wouldn’t you want to know of the health risks and possible benefits for your family?  I would think so.

In my quest for information, I have discovered some very interesting findings.  One is that the local Agent Orange/Persian Gulf Registry Offices in the VA Medical Centers do not document in their computer databases the disease diagnosis of Veterans.  A paper registration form contains this diagnosis only and has to travel to DC to the VA Agent Orange Registry for data entry.  It seems logical for all the registries to post this vital information in their local registry for information protection and security.

Second, in working with the Head of the Cancer Registry Program at Long Beach VA Medical Center, the Cancer Program and the VA Cancer Tumor Registry, we discovered that the Cancer Tumor Registry and the Agent Orange Registry are not cross-referenced for better statistical documentation.  So, many cases of cancer that process through the Agent Orange Registry with Veterans that do not have cancer treatments at the VA Medical Center, do not get added to the Cancer Registry at all.  So the statistics are not accurate.  This should be corrected.

We ask you for your assistance to improve current research efforts and treatment solutions for our veterans and their post-war children, with improve collaborative cross-referenced databases in the United States.  The overwhelming increase of illness and deaths of Vietnam Veterans and their post-war children in this nation are staggering.  More must be done here in the US for our veterans, to truly assist other countries affected by exposure to dioxin and related compounds used in war.  Other countries, such as Australia and New Zealand, have done more accurate and effective research and offered better assistance for their veterans than we have in the US.  This is unacceptable and disrespectful to our veterans.  We must do more for them.  They deserve more; they fought for our freedom and the freedom of other countries.

Since the nineties, lymphoma has increased to become the second highest incidence rate of cancer annually.  There are 500,000 reported cases of lymphoma in the US today.  An additional 87,000 new cases are diagnosed annually.  The State of California ranks number one in reported lymphoma cases in the nation.  Los Angeles County ranks number one in nationwide county statistics; second, is San Diego County.

Both of these counties have significant numbers of military Veterans living in them.  I ask you, “How many of these lymphoma cases are Vietnam Veterans or their post-war children?  And how many of them and their doctors don’t know of the connection?  Are we asking the question in our nationwide cancer registries, “Are you a veteran?” And, “Of what wars?” And, “Are you a post-war child of a Veteran?”

This important data is necessary and needed in our quest for specific data on the health of our veterans nationwide. I suggest we add these questions to statistical data systems and develop a national awareness campaign to find especially our Vietnam Veterans and educate the medical community in the United States of the service-connected diseases of veterans, so they can better assist their patients and refer them to the VA for additional assistance.

Please seriously consider our request as we try to assist those that must face the challenge of fighting for their lives once again, only this time here on United States soil.

Thank you very much for your attention to this important issue.


Genevieve Douglass

AOWAC Co-Founder