Barriers to Treatment Can Be Both Physical and Financial

---

DR. ROY SMYTHE: Chief, how you doing? How you feeling?

MR. JOHN ROSS: A little better. Not much.

DR. ROY SMYTHE: How's the stomach?

MR. JOHN ROSS: Still hurts me.

DR. ROY SMYTHE: Still hurts.

WIAN (voice-over): Jay Ross (ph) has mesothelioma, an especially deadly cancer that attacks the area around the lungs and is linked to asbestos. The former Navy shipyard worker lives in Mississippi, but he's had to travel to Houston for treatment.

DOROTHY ROSS, WIFE OF CANCER PATIENT: We had no options there. We had gone to a lung specialist and he told me that there was nothing he could do for him. All he could do was for us to make him comfortable.

WIAN: In other words, a death sentence. So the Rosses sought a second opinion from a specialist at Houston M.D. Anderson Cancer Center, one of only a handful of hospitals equipped to treat mesothelioma.

Dorothy and truck driver son John Jr. have spent tens of thousands of dollars and missed months of work making the 700-mile, 11-hour trip to Houston.

JOHN ROSS JR., SON OF CANCER PATIENT: Before this happened to my dad, he was diagnosed with it, I had a few dollars set aside. And now I just -- I work from week to week to pay my bills.

---

Dr. Roy Smithe

DR. ROY SMYTHE, M.D. ANDERSON CANCER CENTER: Most patients who get this disease, I would say about 75 percent are blue-collar-type people that were exposed to asbestos during the course of those sorts of jobs earlier in life.

The major problem that we have with these patients is the fact that there are out-of-pockets costs that insurance companies don't cover, which include the travel to and from centers, staying in hotels, spouses not working.

WIAN (on camera): About 4,000 Americans get mesothelioma each year. It's linked to inhaling asbestos fibers and can take decades to show up. It's also difficult to diagnose because symptoms mimic pneumonia and other conditions.

(voice-over): Last August, retired auto mechanic Eduardo Sanchez (ph) saw a doctor for a persistent cough; the first diagnosis, asthma; the second, tuberculosis. Finally, after two months, tests revealed mesothelioma had engulfed 92 percent of one lung.

IVONNE VERDECIA, DAUGHTER OF CANCER PATIENT: The surgeon decided not to do surgery since it would be too detrimental to him to remove the lung. So, he didn't even advise any kind of treatment or anything.

WIAN: Verdecia began searching for a mesothelioma specialist willing to accept state health insurance. It's a common problem for patients seeking specialists of all kinds. It's complicated by cuts in Medicare payments to doctors, rising malpractice insurance premiums, and cost-cutting by HMOs.

---

Dr. Robert Cameron

DR. ROBERT CAMERON, UCLA MEDICAL CENTER: There's say that there's no good treatment for this disease. And they basically don't want treatment to be given. So, they put patients through lengthy review procedures and try to delay treating the patients.

WIAN: Sanchez had to wait five months to begin receiving Alimta, a drug now undergoing clinical trials that has shown some promise. But even with the best treatment, most mesothelioma patients die within a year.

VERDECIA: I hope to God that it wasn't too long.

WIAN: Advocates want more federal funding of mesothelioma research and treatment, since about a third of victims had asbestos exposure in military-related jobs. As for getting patients to treatment centers, Houston's Dr. Smythe has started a foundation to help with out-of-pocket expenses.

Casey Wian, CNN, Los Angeles.

*** POSTED FEBRUARY 6, 2003 ***

---

Admiral Elmo Zumwalt

" I want to commend CNN for a job well done in its reporting of the devastating effects of a mesothelioma diagnosis. My father, Adm. Elmo R. Zumwalt,Jr., former Chief of Naval Operations from 1970 to 1974 succumbed to complications due to mesothelioma in January 2000. More needs to be done to find a cure and there is an honorable organization called MARF www.marf.org that is working towards that goal. Because mesothelioma is a disease that afflicts a significant number of those who have given service to this nation such as our former Sailors it seems this nation can pay back our gratitude by granting funding towards a cure. This disease will continue to ravage as a new generation of service men and women --our WTC firefighters-- succumb to the devastation of the disease. I applaud CNN for taking the first step in opening our eyes as a nation. In honor of those who have given so unselfishly of themselves and in honor of those who are willing to continue with that sacrifice as we face the brink of war, I ask that CNN help further the cause of finding a cure for mesothelioma by encouraging DoD to contribute funds toward this noble cause."

--- Mouzetta Zumwalt-Weathers, MARF, Daughter of Admiral Elmo Zumwalt, who died of mesothelioma on January 2, 2000

---

Nancy Buszinski is the widow of Anthony (Tony) Buszinski, who passed away August 3, 1999 after suffering for 17 months with malignant mesothelioma. Tony went through two extensive surgeries, chemotherapy and radiation treatments. Nancy believes we need to find a cure, and that research is the key. She has committed herself to finding ways to raise funds for research and to help create public awareness. She is a member of the Family Advocacy Board of the Mesothelioma Applied Research Foundation (MARF).

The following is a letter Nancy emailed to CNN's Moneyline on February 11, 2003

I tuned into CNN‘s Lou Dobb’s Moneyline on February 5, 2003. The short segment accurately described the disease… Doctors are still handing out death sentences each time they tell a patient that they have mesothelioma.

I have been a member of the Mesothelioma Applied Research Foundation’s (MARF) Family Advocacy Board since it’s inception. Our mission is to eradicate mesothelioma as a life ending disease. (PLEASE SEE www.marf.org). We raise money for research and are in contact with mesothelioma patients around the world to give them hope, comfort and guidance.

My 49-year young husband, Tony died of Mesothelioma on August 3, 1999. Tony had Keystone Blue HMO for his medical insurance and we had to fight Blue/Cross Blue/Shield to pay for the two surgeries that he had done at Brigham & Women’s Memorial Hospital by Dr. David Sugarbaker, expert mesothelioma surgeon. Our primary doctor and oncologist both urged us to go to Boston – they said that that was Tony’s only chance and yet I had to fight Keystone tooth and nail for payments. For the second surgery I had to pay Brigham & Women’s $11,000 out of pocket money before they would even operate the second time. (They were afraid they wouldn’t get their money!)

We spent a total of 7 weeks in Boston at a hotel ($120.00 per night – which was a reduced rate for families with loved ones in the surrounding hospitals). We also paid for transportation (air fair up and back – at least 7 times – for the surgeries and also follow-up visits), food, taxi’s, telephone calls back to PA to loved ones, etc. The total was around $15,000 for all of this. Tony and I were blessed that we had that kind of money to put out for this treatment… how many are not as fortunate?

I feel the federal government must fund mesothelioma research. MARF has awarded $600,000 in research grants but that hasn’t even put a dent in what needs to be spent for research (Alimta is a start).

Senator Patty Murray’s (WA State) Ban Asbestos in America Act, Senate Bill 2641 calls for a variety of needed actions (http://murray.senate.gov/asbestos.html). This bill is long overdue.

Asbestos exposure is fatal and mesothelioma is an epidemic that is not going away!