I am telling this lengthy story because it needs to be told. The director of the Asheville North Carolina Veterans Administration Medical Center has made it a practice to have members of his staff systematically turn away any veteran to whom they figure they can deny treatment. This practice is ongoing and has been for the furtherance of the director's personal career, under the guise of economizing. Veterans' co-payments are turned back into the regional office instead of going for patient care. This information was provided to me by a former Congressional aide. Congress recently granted this facility $26 million for its expansion but patient care is low on the director's list of priorities. Many of these veterans have no private health insurance and have nowhere else to go. A number have died because they could not get care in time. They are not impoverished or underprivileged. They are shocked to find that they cannot receive at the Asheville facility care which would be routinely available at any other VA facility. Apparently because of the whimsical personal policy of the director, James Christian, they are simply being denied illegally the care to which they are entitled.
Telling this story is most painful for me. Oz was my best friend, my soul mate and the great love of my life. His illness, though terrible, could have been treated in a timely manner had he been seen when he made the request. He did not live to see his son graduate from high school.� He will not get to walk his daughter down the aisle on her wedding day.* He will not be with us physically for any of those important family events now.� Our children's children will never have the joy of knowing their grandfather.� There will be no more camping trips, fishing expeditions or the other things we had planned. From now on this family "flies in missing man formation."
Oz was born in West Virginia, and although very cosmopolitan, from both his travels in show business and his childhood as an "army brat," he longed to retire in the mountains, to return to a simpler life. He knew about Brevard, NC, and after his mother passed away in November, 1995, he started to plan to relocate. For 10 years we had cared for his mom in our home, even though Oz himself had been badly hurt in a car accident in 1984. Paralyzed from a stoke in 1985, Granny, as the kids called her, never had to spend a day in a nursing home.
On October 24, 1996, my husband, Oz, and I walked into the Asheville VA Medical Center. Oz showed the desk clerk his ID Card from the Miami VA Medical Center� and explained that he was a VA cancer patient. He explained that he was due for his checkup, that he needed a chest x-ray and blood work, and that he had been having symptoms that felt like a bad chest cold.� The person at the desk looked at the card and said "That's no good here." Assuming she meant that he would have to be issued a new card, he again explained that he had received all his treatment through the VA. She replied, "We don't have to treat you here. It's not service connected." He asked, "Where am I supposed to go for treatment?" She told him he would have to go "out into the community." He explained that he had no private insurance, a very modest income, and was not eligible for Medicare or Medicaid.� He told her that the family had just relocated and he was following his doctors' orders to continue getting follow-up care at the nearest VA once we got settled, and also to report in, should he experience any symptoms. He asked her where he was supposed to get health coverage if he'd already had cancer. The clerk wouldn't budge. When asked why he could be treated at any other VA medical facility in the country but this one, she only replied, "Ask your Congress."
By the time Oz was finally seen at the Asheville facility, seven months later, the cancer was raging out of control.
How could such a thing happen, you ask. That's what I am still asking! Why was he not referred to eligibility? Why was he not asked for proof of income? Our income for a family of four was under the threshold for category I non-service connected veterans. And why was he not triaged and referred to ENT? At that time, were all non-service connected veterans being turned away because of lack of funds? Or only cancer patients because they are so expensive to treat? Or only patients without supplemental insurance or Medicare which could be gleaned and turned back in to make it appear that the facility was saving money? Why has the hospice ward been shut down and why have the oncology and cardiology departments both been intermittently slated to be closed? Why are there no longer any clinics on Fridays? Why are many of the cancer patients who do manage to get seen often asked to drive to far away places like Ashland, KY for chemotherapy treatments, when there is a fine oncologist on staff at the Asheville facility who can readily administer chemotherapy treatments right there in Asheville?
As soon as we left the desk that day, we went to see the patient representative, Bob Wright. We told him what had just happened and he accompanied us back to the front desk. The entire exchange was repeated in his presence, but apparently he was not given the authority to override the clerk. We returned to his office and he told Oz to get reports from the Miami VA concerning his cancer. He also gave us a booklet outlining the guidelines for eligibility. It was identical to the one we already had with the same guidelines in effect nationally. He gave us a post-it with his name, title and fax number. He said to send a notarized letter to the ENT clinic in Miami requesting the information be sent to him.�� Oz sent the letter with the post-it attached and the records were sent from Miami on Nov. 6. The package sat in the Asheville mail room unopened for several months.
Meanwhile, Oz waited for an appointment slip. November came and went.� In December we were to close on our house in Miami. We had been paying our mortgage and at the same time, rent on an apartment in Brevard. Our two children, who were attending Brevard High School, both had medical emergencies shortly after we moved, one in September, the other in October. Since we had no insurance, we had numerous bills which we had to postpone paying until we could close on our house, at which time we would have the money. To complicate matters, Oz was the only driver in the household at that time because the children were both taking drivers ed as a prerequisite to getting their licenses. The October visit to the VA was on schedule for Oz's regular followup for throat cancer. He had been seen in Miami in July.� At that time, a chest x-ray had been scheduled but had been postponed at the last minute.� Meanwhile we moved. It was for this reason he requested the chest xray and other tests which were all generally done together. The visit should have been routine. His previous chest x-ray and blood work in January of '96 had been within normal limits.
By late November, it had been a month. With no appointment scheduled, Oz figured it would make sense to see the ENT people in Miami when we closed on the house in a couple of weeks. He could have the doctor write a letter and hand carry records to the Asheville VA.� But the buyers stalled us, pushing the closing date back a week at a time. He did not want to press the family's finances to make an extra trip to Miami, even though I urged him to do so. We anticipated that we would be leaving at any time anyway for the closing. I couldn't persuade him to try to find a private doctor who might see him and let us pay after the closing. He was remembering his friend Dr. Ray Mummery's admonition when we had thought of seeking private care for Oz in Miami. I suggested that we could sell our house to pay for treatment. Ray told us "What your house is worth would not begin to cover the cost." As it turned out, Oz did get excellent care at the Miami VA for the throat cancer with a complete recovery.
On Superbowl Sunday, January 27, Oz began to hemorrhage very badly. Since his mother had had colon cancer and he had also had cancer, it was very frightening as there was a lot of blood. He went to the Asheville VA and they scheduled him for Tuesday for proctology, and sent him home still bleeding. He again informed them he was a cancer patient but was not scheduled for ENT, even though the other troubling symptoms were ongoing. At the Tuesday appointment, a doctor prescribed proctofoam for the hemorrhaging. When Oz told him that he was a cancer patient and needed a chest x-ray, the doctor said "No, no no you do not need these procedures. This is what you need." (holding up the tube of Proctofoam)
Oz was scheduled for a test in proctology on Feb. 11. He kept the appointment and again told yet another doctor that he was a cancer patient and needed a chest x-ray. A CT scan of the LOWER TRACT ONLY was scheduled for the 19th. He was still not referred to ENT. He told the clerk that he was supposed to get a new card but she didn't want to give him one. He told her, "If you go down to the mailroom, darlin', you're sure to find my records. I know they are there." She did so and came back scowling, a large package in hand. She grudgingly made him a card. The records were still in the package, unopened. Meanwhile, the real estate lawyer informed us that our buyers were finally ready to close. Oz emailed the VA in Washington on February 15 about the runaround he was getting. We stopped at the Asheville VA on the 19th on the way to Miami in order to try to pick up his records. For over an hour and a half he tried to obtain the records but was refused. Finally they told him they would FedEx them to the Miami VA, which they did.
We got into Miami late Thursday evening. Early Friday morning Oz left me to tidy up the house, while he went to the VA. He was in a hallway, standing in line when Dr. Arnold from ENT saw him and said "Hey, how are you? I thought you moved." Oz told him we were back in town closing on the house. Dr. Arnold asked "Did you ever get that chest x-ray?" Oz told him all that had happened and the doctor, who was completely appalled, escorted him personally to x-ray. The results looked very suspicious. The left lung was badly clouded with dark shadows. Malignancy was suspected. We were stunned. Oz was given both a lower tract and upper tract CT scan the following Monday. Lower tract looked OK but the left lung looked ominous. Various options were discussed for a biopsy.� The optimum procedure would be to go in with a tube and extract a specimen. He was told he would need to stay with someone and rest up for some time. We had just sold our house. Also, since I am legally blind, he would have to do all the driving back to Brevard or find someone to drive us. We closed on the 28th. It was decided to try a needle biopsy, a less intrusive procedure. The results were negative so we were overjoyed. But Dr. Arnold warned us that Oz needed another biopsy in 2 to 4 weeks and that he must not put it off. He should try to have it done closer to home since we lived in North Carolina now and our children were in school there. Since Asheville refused to deal with the cancer at all, we looked for an alternative location. Dr. Arnold recommended the Raleigh-Durham VA because it was close to Duke University, a teaching hospital similar to Miami, and would have an excellent staff. He arranged to have the records sent there.
Near the end of March, I reminded Oz he should make an appointment to go to Raleigh-Durham. On the 25th, John Peterson, Brevard's mayor, stopped by our apartment in response to the February email and offered to help Oz get seen at the Asheville VA. In addition to his mayoral duties, he worked as a veteran's liaisson for Congressman Charles Taylor. John told us we should call Jeff Moffett because he might be helpful, and I did so on March 26th. I explained about the biopsy and told him that Oz was planning to go to Raleigh-Durham because Asheville wouldn't do it. I asked if there was any way it could be done in Asheville. He told me that he was sorry but that he couldn't help us. He said Oz could be seen 3 times for any one problem. I said, "So for lung cancer he could have a biopsy, one follow-up and one treatment and then what?" He said "I'm sorry, Mrs. Bach, there is nothing I can do." When I asked why this was so, he echoed the words of the clerk in October, "Ask your Congress," as if he was reading from a script.
Oz kept a March 28 appointment with proctology at which time he mentioned that his records were in Durham where he was to have the lung biopsy and that the hemorrhaging had subsided - thanks to the Miami proctology people and the dietician. On April 1 we called Raleigh-Durham only to be told that they could not see Oz because he was "out of their area." Dr. Arnold also called them and left 6 messages which were not returned. He finally called us and his voice was panicky. He asked how close we were to Atlanta. Oz said "Closer than to Raleigh-Durham." The doctor said he would arrange to have the records transferred once again.
By now it was mid-April and Oz was seen by Dr. Fos in urgent care in Atlanta and scheduled for another needle biopsy the following week. He was admitted on Monday, CT scanned on Tuesday, biopsied on Wednesday, and released on Thursday.� He was never questioned as to eligibility. He was told the results would be ready in 2 weeks. We began calling in early May but could not find out over the phone the results of the biopsy. On May 7, Oz finally got hold of Dr. Fos. who asked if he could come down the next day. He did so and was seen by another doctor who said he couldn't find the test results but was scheduling him the following week for oncology.
On April 21 an article written by Phil Alexander appeared in the Asheville Citizen Times about the musical Bach family and it was read by Leni Sitnick, who was at that time running for mayor of Asheville. She called and asked Oz if he remembered her from Miami, where she had grown up. He did and she invited us to a get-together at her home. It was scheduled for the evening of the 8th. We had to tell her what was going on with Atlanta and that Oz might have to come late. He did and it was a lovely gathering. She offered to send him to an oncology associate of her husband, who is a radiologist. She said commuting that far was not good for him.�
By now we feared the worst. The records were FedExed to Asheville where they could be picked up and taken to Dr. Bryan, Leni's acquaintance. We called to verify but no one could find them, even though they had been signed for. On Wednesday, we went to Asheville to the records department and Oz begged the clerk to look for his records, that he might be dying of cancer! She walked away and returned with an unmarked, sealed, white business-sized envelope. Oz opened it in the elevator and nearly collapsed. On the front of a 5 page report it said "positive for malignancy."
We took the report to Dr. Bryan and that evening called John Peterson. We told him that we knew the x-rays were there but that we were getting a runaround. He arranged to meet us in Bob Wright's office the next morning. Once John was there, Bob miraculously produced the x-rays, which we also dropped off for Dr. Bryan. Both men encouraged Oz to try to see Dr. Lucke and Dr. Lind, who are excellent physicians at the Asheville VA Center. But with no way to get past the bureaucrats so that he could be seen by them, what was the point? On Tuesday, Dr. Bryan gave us devastating news. It was a stage 4 carcinoma and Oz had only a year, possibly two to live! Surgery was impossible but a combination of chemotherapy and radiation might help. The doctor wanted to consult a colleague in radiation oncology, a Dr. Thomas, to consider the best course of action. Leni had told us not to worry about the cost, that help was available.
We went to see Pastor Mike on Wednesday and he referred us to the cancer clinic in Brevard. He said there was money in the "bishop's fund" which could be used to help Oz. In Brevard, we saw Dr. Thomas, a radiation oncologist who turned out to be the same colleague Dr. Bryan was consulting. Dr. Thomas was already familiar with the case and said he would go over the films with us in Asheville on Tuesday. Then he asked, if Oz had VA benefits, why didn't he go back to the Asheville VA? He mentioned Dr. Lucke and Dr. Lind. Oz explained what had happened. Dr. Thomas asked if he might call Dr. Lucke on Oz's behalf. Oz agreed. He was gone about 10 minutes. When he returned, he told us Dr. Lucke would be calling Oz at home.
We had barely gotten home when Dr. Lucke was on the phone. He was irate about what had happened, and instructed Oz to come see him in his office. Oz saw Dr. Lucke on Wednesday and went over the films and preliminary lab reports. The doctor felt that there was a chance the cancer was not a metastasis but a different type of cancer, a new primary. If so, it might respond well to chemotherapy. He was scheduled on May 28 for the biopsy he should have had in late October! Had it been performed at that time he would have been in an earlier stage of lung cancer with an 85-90 % survival rate instead of a death sentence!
The biopsy showed that the lung cancer was a new primary and not a metastasis. Though a non-small cell lung cancer (large cell neuroendocrine lung cancer), it was histologically similar to small cell lung cancer and should respond well to Taxol and Carboplatin. It is a relatively rare type of cancer. Dr. Lind began chemotherapy at three week intervals on June 11. The treatments were stopped after the 5th one because Oz developed neutropenic fever. He then began a series of radiation treatments. After all the treatments, x-rays showed that most of the multiple tumors had shrunk dramatically. The one largest and most solid tumor though had not shrunk much. Oz felt pretty good for Thanksgiving and Christmas. He had lost his hair but it had grown back and was beautiful. His weight stayed pretty normal.
We had planned after Christmas to go back to the Miami VA, where some experimental work was being done with radioactive "seeds" placed directly in tumors. Perhaps the one large tumor could be further reduced, the one Dr. Lind referred to as "the big baddy." This time, arrangements could be made for the children to stay with Pastor Mike and Ruth. Over Christmas vacation, however, Oz developed a very bad cold. He waited for it to let up but he contracted shingles on the right side of his chest and was completely miserable for the next couple of months. There is no treatment for shingles but he took pain medication. It didn't seem to help much though and as the shingles were clearing up, pain in his left side was getting worse. He finally got an x-ray in early March which revealed new tumors. A bone scan was done which showed metastasis to the right femur and the spine. We asked about clinical trials. It was decided to do some radiation on the spine for pain to be followed by Docetaxol. After the radiation was done, home health care was ordered following an overnight stay May 7 to stabilize pain.
Oz came home with a cane. His legs were getting weaker. He figured it was the tumor on the femur but by Wednesday he was using an old wheelchair to get back and forth to the bathroom. Wednesday night he did walk into the church and rehearse "I get by with a little help from my friends" which was to be part of an anniversary "roast" of Pastor Mike. It was a wonderful moment with Oz playing bass and Jonathan on drums, our music director on piano and a quartet of men from the choir. Oz just took charge of the rehearsal and shone the way he did when he played with "Spanky and Our Gang." The director had written out a bass part for him, but he didn't need it. He had the most amazing ear. Thursday morning he could not move his legs to walk at all. He had to use the wheelchair and pull himself up with his arms to use the bathroom. Saturday night he was trying to put on his pajamas and he slipped and broke his leg where the tumor was. He was losing all feeling in both legs. He was taken to Transylvania Hospital and then moved to the VA on Sunday.
At that time we still didn't realize that the paralysis was a result of a tumor on the spine. The radiation had not helped this time. Dr. Morganstern told us that the pressure on the spinal cord was likely to result in permanent damage. Oz was moved from a ward to a private room in orthopedics. The break had been set with a pin. We prayed for a miracle.
Since I do not drive, it was necessary for me to have friends from church or one of the children drive me to Asheville every day and bring me home each night. We still hoped for more treatment, but Dr. Lind refused him as a patient. He apologized, saying he knew that some mistakes had been made. Oz was moved to the hospice ward. We now hoped he might learn to use an electric wheelchair and be transferred to Brevard. Since it was non-service connected, transfer to Brevard could not be authorized. Bringing him home was our goal but difficult because of our situation. Oz finally received approval for service connected disability due to cigarette smoking begun in the army. This was due largely to efforts by both Rep. Taylor and Sen. Jay Rockefeller. He was moved to the Brian Center where it was easier to make the daily visits.
A friend put us in touch with county transportation and once his pain management permitted him to tolerate the chair, he was transported home about a dozen times between July and September. He was able to enjoy his home for a few hours a couple of times a week. He had to remain in the chair since it took a Hoyer lift and 2 attendants to get him in and out of it. He also made it to 2 Brevard High School football games where he got to see Jonathan march snare with the band. The Brian Center is about 10 blocks from the high school and there are wheelchair curbs all the way. His mind was starting to go by now and he was saying things and asking questions that did not make sense. Within a few days of that last Thursday afternoon at home and the football game the following night, he lapsed into a state of semi-consciousness. On September 21, 1998, he succumbed to the cancer and slipped away at 7:30 AM as I sat holding his hand. All the nurses came in and were in tears. He was very much loved by all who met him.
If this story makes you angry, please let your congressman know! Nothing can bring Oz back to us now, but if enough people speak up, perhaps other veterans will not have to suffer his fate.
* Unfortunately Belinda has also passed away and has joined her dad in the hereafter.