Veterans and IPF

[antny]

I am a Veteran, served in the USAF 1965-69 with a year in Vietnam 1966-67. I was a Crew Chief on Fighter Jets. I have IPF and the VA linked it to Jet Engine exhaust. The Pact Act was part of the Inflation Reduction Act which gave benefits to those exposed to burn pits and other toxins . I am also enrolled in the Agent Orange Registry at the VA. The base that I was stationed at in Vietnam (Bien Hoa) was heavily defoliated with Agent Orange (AO). The VA has not linked my IPF to AO but most Pulmonologists say it’s suspect.

[botar]

USAF Vet, 66-70, Guam/Thailand-B52D crew chief/flight status. IPF was diagnosed about 6 years ago. I was exposed to AO at both bases. VA stipulated exposure but denied that IPF was linked to AO. Lost 2 appeals through the VSO channels and decided to retain a lawyer. Was finally granted 100% about a year later when “more likely than not” was the final finding. Not sure if the lawyer did anything that a 3rd appeal through the VSO wouldn’t have accomplished, because as it seems, 2 denials are fairly routine. Guess I’ll never know, but the fee of 33% of the back compensation was a hefty sum, but it really didn’t matter. I’m taking OFEV which seems to be holding off additional scaring, and I’m so grateful for this drug and that it extended the common projection of a 3 to 5 year life expectancy. I feel that I’ll be around for many more years. BUT-random diarrhea is the price to pay. I take 150 in the AM and 100 in the PM. Taking 150 twice a day seemed to be too much for my system so I requested to drop the PM dosage down. I was encouraged when I read on this forum a few days ago that taking protein 1/2 hour before taking ofev helps and that seems to be good advice. I always did eat nuts and seeds while taking the morning dosage but I think giving the protein 1/2 hour to process before taking the ofev is more effective. [email protected]

[Paul75]

Vietnam veteran here. IPF diagnosis about 5 years ago but symptoms years before diagnosis. IPF not on agent orange recognized conditions but it took decades before they admitted there was a problem so who knows. The good news is that as a 100% disabled vet I get my meds for free. A month and a half of ofev cost is more than I made in my 12 month tour 😂

[Ken Monroe]

Army Veteran ’74-’78. Stateside the whole time, never exposed to burn pits or agent orange. Worked 2+ years in a heavy equipment repair shop with daily exposure to open running engines (no exhaust systems), open solvent tanks, open paint bays, etc. VA denied any link to IPF. Interestingly they also denied any link hearing loss. Oh well.

[Terry Seland]

I am a 82 year old USN Vet . I served from 1961 to 1964 on USN Destroyers. My IPF was diagnosed about 5 years ago. I have never smoked This condition came up out of the blue and have no idea what triggered it. I worked for AT&T in inside and outside jobs..

If you would like to pursue this further let me know.

Terry Seland

[email protected]

262-692-9880 land

262-685-8271 Cell

[Mike-G]

I am a 79 yo vet who was diagnosed with ipf almost 2 1/2 yrs ago and have been on ofev and oxygen therapy for the past 2 years. I am a Vietnam vet with a disability rating of 70% including agent orange exposure. I have applied for additional disability because of the ipf but the VA denies any connection between agent orange exposure and ipf. I have also recently been diagnosed with pulmonary hypertension which significantly decreases my life expectancy.

[jonathan-poland]

I am a Navy veteran with progressive pulmonary fibrosis (PPF), and not IPF. I have 100% disability through the VA and get my medical care through them. On active duty I was an officer assigned to a submarine being built at the Newport News shipyard. My submarine contained asbestos even though the Navy denied it for years. I was also exposed to asbestos in the shipyard. However, so far at least, I’ve not had any asbestos symptoms. Also the amount of secondhand smoke I breathed was more than most smokers could ever inhale. When I was in, there was always at least 1 cigarette lit in any space on the sub – you couldn’t escape it. What did get me though is the metal dust from the shipyard workers grinding welds, sometimes shoulder-to-shoulder to me. They wore respirators, the Navy crew had nothing. My symptoms started over 20 years after leaving the Navy and took several years to settle on a diagnosis. I am 6 years into the disease now, use O2 w/ exercise & at night, and suffer with 150mg Ofev twice a day.

It doesn’t surprise me that the the number of VA claims are increasing. The number of aging veterans from the Viet Nam and cold war eras is increasing. And in those years it is clear that the military neglected the health of our soldiers and sailors.

I found the disability claim process very exhausting and was denied at least once because “an officers job description does not include accessing spaces where shipyard dust might be present” – what bull to presume what an officer is required to do.

I do have to say that the care I have received from the VA medical team has been top notch! I live in St Louis, MO, w/ 2 medical schools nearby. But the VA care has been better than any I’ve see at the other large hospitals in the area.

[Samuel Kirton]

Hi Terry and Ken,

Thank you both for your service. Are either of you being followed by the VA? Changes to the original Pact Act moved to cover Vietnam Era Vets for toxic exposure. The law was passed in 2022 and expanded following that to include Vietnam Era vets. You can learn more about it here: https://www.va.gov/kansas-city-health-care/programs/2022-pact-act-understanding-health-care-eligibility-and-benefits/

Sam…

[John J Harrigan]

I am an Army veteran from 1950s, and have 10% VA disability rating, but it has nothing to do with IPF. In 2017 the Minneapolis VA needed non-smokers from my age range to participate in a study. So I joined the study, and they gave each of us a CT scan.

One result of my CT scan was finding IPF in the left lung. I’ve been seeing a pulmonologist outside the VA, and up till now the progression has been slow. At my last checkup the pulmonologist suggested anti-fibrotic meds, and I asked if it would be possible to get Jascayd, which was approved by FDA last month, has less dire side effects than OFEF or Esbriet, and has a positive effect on FVC. As I understand it, Jascayd can only be obtained from specialized clinics which don’t include either my pulmonologist’s clinic or the VA hospital here. So my pulmonologist referred me to a pulmonology clinic at the University of Minnesota for that. And she thinks they can help me get the VA to dispense it or at least cover it.

I’ll report back when I get some feel how this process is working out with the VA, because other vets might also want access to Jascayd. The more we share our experiences, the better off we all will be. In addition to Jascayd, early FDA approval is being sought for Tyvaso for IPF whose trials showed improvements in FVC scores. These two meds might be game changers in the treatment program.

[Sailor]

U.S. Navy retired for 30 years. VA service connected disabled for IPF under the PACT ACT. I had respiratory issues as far back as the mid 1970s following surgery and throughout my career. I experienced breathing problems with exertion and recovering from multiple surgeries progressively getting worse. 25 years or so ago the VA did a CT SCAN indicating scarring of my lungs, but I was told nothing to be concerned about. In April 2020 lung biopsies confirmed a diagnosis of pulmonary fibrosis in both lungs. The VA connected to AO Exposure. Multiple CT SCANs later are now indicating asbestos exposure which is very likely due to multiple periods in shipyards on naval ships and bases with known asbestos. I’ve been on Esbriet since diagnosis. I spend at least 18 hours a day on supplemental oxygen and use a walker or wheelchair.

[hi-c]

Air Force Veteran, 1972-1978. Served stateside for 2 years in the motor pool doing clerical reporting. Served 2 years based in Turkey doing Postal/Courier assignment, traveled to several middle eastern countries, Europe, England, Spain and Greece during that time mostly on C-130 aircraft. Spent Reserve Time setting up and training others to rig C-130 aircraft for aerial cargo delivery. I was diagnosed in 2017 with Idiopathic Pulmonary Fibrosis. I feel I had symptoms up to a year prior. I have progressed to needing 8 liters of oxygen 24/7. I started on OVEF for approximately 6 years and switched to Pirfenidone of late. I worked on a farm in my youth as well. I am currently on the Lung Transplant List. I have not approached the VA about any benefits. Thank you for looking into this…

[John14392]

I am a Vietnam veteran with IPF – with no identifiable cause. I am 69 yrs old and the VA is covering all my IPF costs – I have no other disability – my IPF is not linked to my service. I am on the lung transplant wait list right now. They said as long as I applied for a transplant before age 70 I would qualify for a transplant. However, medicare also covers transplants – many transplant programs have no age limit !!! Please check out websites for transplant centers if you are over 70 to see what their age limit is. My VA pulmonologist said 65 is the normal cut off date at my transplant center but said for veteran’s they allow up to age 70.

Please, please look into a transplant and begin the process. You are your best advocate on this and do your homework, look on websites and on the Q’s area for transplant centers near you – within 4 hours drive (else you might have to relocate) either that VA – The Department of Veterans Affairs (VA) has two established lung transplant programs: <mark jscontroller=”DfH0l” jsuid=”StxVke_11″ style=”font-family: inherit; font-size: inherit;”>one in Madison, WI, and one in Seattle, WA</mark>. Both are affiliated with their respective university medical centers (UW Medicine in Seattle and the University of Wisconsin in Madison). Also, look into other non-vet ones that take medicare that have no age limit – many, many. There was a vet I met when I was getting pre-transplant testing in Seattle that was from Puerto Rico and he had been in the long term stay hotel for 16 months – he got is transplant at 20 months.

[Rocky]

Navy 1970-1974, served aboard ship gulf of Tonkin , one 10 mouth deployment and one 7 mouth deployment ,( Viet Nam) 6 month deployment to Subic Bay Philippines armed forces police. Diagnosed IPF in 1996 from routine chest Xray. I’m now 74, on O2 nights and when needed. I don’t think my service contributed to my IPf. I use the VA for mostly meds and check ups. I’m not on any disability but I get those expensive inhalers pretty cheap. I’m not on any of the PF drugs, if anyone wants to know more please reach out, Thank You for your service !

[Mark]

I was in the Air Force 1973-1976, worked in munitions

I was drain 2015, my comment to the doctor was. Well that’s what I get for 30 years smoking, he said nope not from smoking, but from after the military, and maybe before

Driving into the LA area in 1960’s and 70’s your eyes would start stinging and you probably start coughing

My dad worked as an auto mechanic, after his 23 years in the military, and as one of 4 boys we all helped at the shop, so yes exposed to many unhealthy stuff, though at the time 1964-1970

Not much was know after many stuff used, then after the military worked in manufacturing exposed to silica, Freon powder carbon, and other fun stuff, first diagnosed at the VA in Tucson , was not Impressed.

After moving in with family just east and of ST Louis, the treatment at the VA here is the very best I have experienced

[Djb]

I’m a Vietnam veteran that was awarded 100% disability for agent orange causing my IPF. It can be done if you file the proper paperwork. I’m not the only veteran that has successfully filed this type claim

[mickael]

Mickael. 11/18/2025

Was in Nam 11/71 – 04/73 as a sniper going in and out of north Vietnam.

My mos was to be 2311 ammo-tech. 1974 – 1979 work as ammo tech for artillery units. One of jobs was to burn left powder after artillery operations. The artillery units thought I needed to be a nuclear tech also. Many times exposed to burning powder smoke and radiation each time we practiced put nuclear round together.

I’m 71 now and have 3 years of IPF. I’ve been turned down for a VA disability of any kind. I have doctor’s reports by the bucket full. What am I missing when filing for disability. Also can I get the VA to help with the cost of Ofev.

My wife retired this year. I was told a couple years ago that we made too much money to receive help. Now we both live on SSN and savings. Insurance is expensive.

What do I do to get help. What paperwork am I missing.

Lawyers say I can’t get full disability so they won’t help. Don’t know what else to say at this time

Mickael

[Jim]

Navy Veteran Vietnam in country 69-70

Currently rated 100% for Agent Orange in 2017

Took 2-3 years to get this rating, and my wife has helped many other veterans get rated.

She is happy to provide letters, etc., that can be helpful with the rating.