The following are persons who have dealt with issues involving Hairy Cell Leukemia and Agent Orange.  They have supplied their e-mail addresses to our foundation and agreed to be available to share their experiences with others:

Joyce Behrens omaopa@vib.tv - mother of a HCL survivor who was exposed to Agent Orange.  Her son, Greg Beherens, filed a claim for compensation with the Veterans Administration in February, 2003.

Greg Behrens gbehrens@pn.usbr.gov - Viet Nam veterean who has already filed a claim and is willing to share his experiences with others.  Greg is just completing a 6 month pentostatin treatment.

William Egen zerocep@ec.rr.com  - Vietnam service 67-68, 72-73 as pilot in Chu Lai, Da Nang and northern I-Corps;  retired '86 and diagnosed with HCL Jul '94 - in remission with low white count; filed for disability with VA based on Agent Orange exposure- denied Jan '05; I would appreciate any info
from other vets regarding their experience with HCL and the VA; I am resubmitting my claim with evidence quantifying HCL as a subset of Chronic Lymphocytic Leukemia.

Update in 2005,

It has been a long time since 67/68 and I Corps.  I flew 175 missions in A-4s out of Chu Lai the first half of my 13 month tour and then spent 7 months with the 1st Marine Division in Da Nang.  It is amazing to me that the best (only?) resources to pursue this battle is through informal contacts on the internet.   The main thing I have learned is the VA won't help!  They are great with paperwork and process but beyond
that, they own the haystack and the needle and it is up to the vet to figure out the details.  You need to get in the process by going to your local VA office and filing for VA disability and they will tell you how to
get the AO screening.   The screening is recommended to help understand the impact of AO but it is for their database and is not part of the disability process.   You need your DD-214 and several other documents to prove service in Vietnam (on the ground).   If you have any medical records that pertain-
your experiences- you will need those as well.  A statement from your physician is also recommended.
HCL as a category will not get you any recognition for disability unless you can show it is directly connected to your in-country experience AND OCCURED WHILE YOU WERE ON ACTIVE DUTY- "SERVICE CONNECTED."  Having said that, HCL is widely recognized as a subset of Chronic Lympocitic Leukemia (CLL) which is in the presumptive category for exposure to AO and will be honored as such by the VA.   That is the rub.  The VA, in my case and others, denied any disability because HCL is not listed in the presumptive category and they will not accept the subset connection with CLL.  Additionally, because most vets with HCL have the occurance years after being exposed, they deny any service connection because it can't be proved based on medical records- if it is not in your military medical record, it is presumed to be a civilian connected issue.

Now for the short answer.  I have not done this yet but I did internet inquiries and was given the following guidance from another vet after my claim was denied.  You have to wade through the paperwork and get in the system first.  But the best path after starting the process is to use several appeals already reviewed and approved by the VA for HCL and AO.  Yes, they have given disability to vets for HCL and AO that have filed appeals after being turned down!  They won't tell you that up front!  You go to the VA web page (www.va.gov), click on "Appeals", and then click on "Search Appeals" and you will get a page that allows you to enter key words and years.  As an example, enter "Hairy Cell Leukemia" and 2002 and 2003 for two separate searches and you will find HCL was approved for several of the appeals- specifically, #0211735 (year 2002) and #0300089 (year 2003).  Like I said, I have not done this yet but will be submitting this as additional info soon.  I just had another bone marrow and I need to see those results before I file additional information on my existing claim.  Once  you file and are denied, you have 1 year to file additional info from the date of denial (but the claim is based on the original date of filing).  If you appeal a denial and it is denied again for whatever reason, the case CLOSED.

It is better to file additional info which keeps your case open and working.  Another interesting turn is that the 2003 approval (#0300089) is based on medical opinions that HCL is a subset of Non-Hodgkins Lymphoma which is a presumptive condition for AO disability.  All the bottom feeders (lawyers!) came to the conclusion that the benefit of the doubt goes to the vet.  So, in both cases they said HCL was approved for disability as a result of exposure to herbicides while on active duty.

VETERANS ADMINISTRATION APPROVAL:  Great News! The VA has awarded me a service connected disability based on Agent Orange and the HCL/CLL connection! I used my doctor's statement, your
letters to Principi and the Institute of Medicine "2004 Update on Agent Orange and the Vietnam Veteran" to substantiate the claim that HCL is a form of CLL. The VA agreed and also sighted additional references such as the Leukemia and Lymphoma Society and the Merck Manual (!) as supporting HCL as a CLL. As a caution, they treat every claim separately and I would assume HCL will not be added to the AO list perse- everyone will have to fight the paper battle. I filed on 21 April, 2004 and received the approval 13 Oct, 2005 after several interations of information and denials.

I am out of remission again and have been under treatment since May of this year- bone marrow in 2 weeks for proof of rehab again (I hope).

Good luck and keep up the fight!

Semper Fi

Bill Egen, LtCol, USMC (Ret)