THE REAL DEATH PANELS?

Nexium everywhere but no capacity for Doxil

Critics of health care reform warned the government would set up "death panels" if the law was enacted.  That hasn't happened, but such panels do exist, thanks to the actions of Big Pharma. Today pharmaceutical companies are choosing who will live and die when they decide not to manufacture drugs needed by cancer patients - like me - who are at risk of premature death.

There is a nationwide shortage of Doxil, a chemotherapy drug used to treat recurrent ovarian cancer, among other cancers. I learned about the shortage from my oncologist in July when he said that the best treatment for me was Doxil in combination with carboplatinum for my now recurrent ovarian cancer, but I would have to start without Doxil.  New supplies were not expected until mid or late August.

The drug is distributed by Janssen Products, LP, a Johnson & Johnson company, and manufactured by Ben Venue Laboratories in Bedford, Ohio, a unit of Boehringer Ingelheim GmbH of Germany. Ben Venue’s representative explained that the company is facing "manufacturing capacity constraints" that have held up some products, and it is working diligently to prioritize and expedite manufacturing for current orders." (WSJ 7/21/11)  I wonder if  the priorities are set because of the lower financial return Doxil brings or the fact that it is a woman's disease that Doxil mostly treats.

I learned from an online board that women around the country were scrambling to places remote from their regular treatment centers to get the precious Doxil before it runs out.  One woman said a small supply was available in Texas; another thought some could be had in Boston. It turns out that by early August, none was available in the United States.  One person has gone to Paris to finish her Doxil treatment.

Shockingly, Doxil is only one of many drugs in shortage in the United States.  Three other mainline chemotherapies for ovarian cancer, carboplatinum, cis-platin and taxol, as well as chemotherapy drugs for breast and colorectal cancer, are in short supply.  I learned from a new friend online that her clinic in Los Angeles has run out of taxol. Luckily, I get my infusions at Cedars Sinai Medical Center, which still
has a supply of these three drugs even though it does not have Doxil.

On August 18, 2011, Janssen issued its latest update on the Doxil shortage.  It announced that it had implemented its “new allocation process for a modest and limited supply of DOXIL®” and apparently all available Doxil has been distributed to certain patients whose physicians certified in writing that the patients were already on Doxil. There is now a waiting list that will be fulfilled as new supply eventually becomes available.  However, Janssen cautioned,   “As supply will remain intermittent in the coming months, Janssen Products, LP continues to recommend that no new patients be started on DOXIL®.”

So, the original announcement that Doxil would be available again by late August proved to be inaccurate.  Doxil is available again only for special limited cases, which unfortunately do not include me because I have not yet started treatment with Doxil.

According to the American Society of Health System Pharmacists, drug shortages currently affect about 200 medications in the United States, including antibiotics. The FDA reports record shortages for 2010 and projects more record shortages for 2011.  But the FDA has no power to require drug manufacturers to explain why there are shortages and effectively must beg the manufacturers to keep it informed.

The only real reason for these shortages is the economics for Big Pharma., which makes more money from new drugs, antidepressants and potency pills than generic chemotherapy drugs.  Why make drugs for which you can only charge $3.00 per dose when you can force doctors because of shortages to prescribe new medications that cost $10,000 per dose.?

This all means I could go for an indeterminate time not getting the drug that my oncologist says best increases my odds for remission.  I am starting to feel the need to scramble myself.  For this grandmother,
the “allocation system” of who gets Doxil (and possibly the other drugs with shortages used to treat ovarian cancer) has made the drug companies the real death panels.

Senator Klobucher introduced S. 296, Preserving Access to Life-Saving Medications Act, which would require manufacturers to report shortages and reasons for the shortages to the FDA. A similar bill, HR 2245, has been introduced in the House. Both bills are still in committee.

While I support this legislation, it is unfortunately merely a band-aid over a gaping wound.  Drug companies need to become more accountable for their profit driven decisions about what drugs to produce.  My fellow cancer warriors and I cannot fight the good fight if the drugs aren't even available.

Life in the Fast Lane (of the Internet Highway)

My niece, who is now in her late 20s, was a precocious toddler, in my opinion.  She loved the movie The Secret of NIMH and at age 2 was perfectly capable of putting a Betamax copy of the movie in the player and watching it over and over (and over).  Earlier this summer, I watched my 2 year old granddaughter use the remote control to try to turn on "Yo Gabba Gabba!" on their knobless Bravia television.  Later she watched a music video of Numa Numa Yei on an iPhone while her auntie was combing her hair.

According to one survey, between roughly one fifth and one third of two year olds (depending on whether the moms are Gen X or GenY) today use smartphones, internet and digital cameras. Of course, the survey was done of  moms who themselves were high users of internet, social media and smartphones.  Indeed with the advent of these technologies, life travels in the fast lane from very early ages.

According to an AP article by Dinesh Ramde, we older folk (the baby boomers) clearly decry the speed at which things are changing but apparently even 30 somethings think that things are moving too fast. Is the fast lane becoming even faster?

Every year since 1988, Beloit College has published the Mindset List which provides a list what they call "the cultural touchstones that shape the lives of students entering college". From this years list:

• There have nearly always been at least two women on the Supreme Court, and women have always commanded U.S. Navy ships.

• “Don’t touch that dial!”….what dial?

• Amazon has never been just a river in South America.

• They’ve always gone to school with Mohammed and Jesus.

• The Communist Party has never been the official political party in Russia.

• Music has always been available via free downloads.

• They’re the first generation to grow up hearing about the dangerous overuse of antibiotics.

• They’ve often broken up with their significant others via texting, Facebook, or MySpace.

• Their parents sort of remember Woolworths as this store that used to be downtown.  (emphasis added)

• They won’t go near a retailer that lacks a website.

• “PC” has come to mean Personal Computer, not Political Correctness.

Copyright© 2011 Beloit College

 For my borderline-Gen X niece, these are some examples from the Mindset List for her cohort:

• The Kennedy tragedy was a plane crash, not an assassination.

• They have always bought telephones, rather than rent them from AT&T.

• There have always been ATM machines.

• Three Mile Island is ancient history, and nuclear accidents happen in other countries.

• Women sailors have always been stationed on U.S. Navy ships

•  They have never used a bottle of "White Out."

I suppose one of the really big changes between 18 year olds (Gen Z)  and those near or  in their 30s (Gen X) is the prevalence of and dependence on smartphones.  Also, who needs an ATM these days?  Everyone pays with debit cards.  And my niece's crowd used Myspace, not Facebook,  which is now the domain of older people as much as teenagers.

Is everything accelerating?  Will newborns in a few years reach out for whatever replaces smartphones? All I know is that I hope I am around to see and I hope that I can keep up, even if Gen X can't!

Old Madrid by Bus

When I arrived in Madrid from London on July 14, 2011,  it was already afternoon.  I had decided that, given my limited time in Madrid,  I needed to get an overview of the city so I headed out to take a tour bus, Bus turistico Madrid. After consulting with the concierge at my hotel, I went to the Starbucks in the Palace Hotel building in the Plaza de Canovas del Castillo, with it famous Neptune Fountain, grabbed a sandwich and coffee and hopped on the Route 1 (Historic Madrid) bus, which stopped in front of the Starbucks.

Our first stop was Museo del Prado.  I took a few pictures, knowing that I would be going there for an extended visit later.  In fact, since the Prado was right across the street from the hotel, I did walk over there after I finished the bus trip.  But I digress from the charms of the bus trip.

The first photogenic site that I can now identify in the pictures I took from the bus (which have the charm of being cut off because of the perspective) is Puerto de Alcala.  The gate is in the Plaza de la Independence, near the entrance to the famous Parque del Buen Retiro, which I only saw in the distance even though it was very close to my hotel.  I hope I will make it back there some day.

Next up was the Iglesia de San Manuel y San Benito on  Calle de Alcala, reportedly the longest street in Madrid. The church was built in the early 20th century and is an example of neo-Byzantine movement. (Interestingly, the Basilica of the National Shrine of the Immaculate Conception near Catholic University in Washington DC is also an example of this type of architecture style.).

The bus then went through Salamanca district, which the bus tour narrative described as one of the tonier areas of Madrid.  Salamanca was the first expansion area of Madrid in the mid 19th century and if I recall correctly the streets were modeled on ones in Paris.  We spent our time on Calle Valazquez as the photos below will show.

We turned on Calle Goya, which is supposedly one of the wealthiest streets in Madrid, and headed to the Plaza de Colon, still in Salamanca.The plaza is named after Christopher Columbus, (Colon en espanol) and a statue of the same sits in the middle of plaza.  The National Library, founded in 1712, also is on the Plaza de Colon.

Our next major site of interest was the Plaza de Cibeles,  the one site I remember on my way in from the airport that the taxi-driver identified. (The taxi driver did not speak English and no hablo espanol or maybe un poquito as I told him which of course led us to try to converse anyway. ) The plaza sports the   Cibeles Palace (Madrid City Hall), the Bank of Spain  and the Metropolis Building and the famous fountain finished in 1782.  It is more or less the beginning of the Chueca district.

We then took the Gran Via, a major street in central Madrid built in the early part of the 20th century, and turned left where shortly we passed the Parque de la Montana, location of the Templo de Debod (an ancient Egyptian temple) , and wound up driving for sometime by the fabulous royal palace, Palacio Real,  and the nearby Teatro Real and  Plaza de Oriente. (Los Austrias distrist)

We continued on Calle Balien,  got our first look at the Gothic Revival style Catedral Almudena, and shortly thereafter some views of Madrid from the viaduct.  As we started on Gran Via de San Francisco, now firmly in La Latina district, we got a view of another beautiful church, San Francisco el Grande, in the neoclassic style.  We then came to the Puerta de Toledo, a 19th century gate, started by Joseph Bonaparte and finished by Fernando VII.  We returned up Gran Via San Francisco/ Calle Balien and turned on Calle Mayor.  After passing Iglesia Catedral Castrense (Military cathedral) a Baroque church built in late 17th Century,  we passed (a bit of a whirlwind unfortunately) the well known Plaza de la Villa  and Plaza Mayor which were bustling with street life as the tour books say.

Our last major site on the tour for me was Puerta del Sol area, which disappointed me a bit. Somehow I missed the elegance of the plaza containing the Puerta and instead found the surrounding neighborhood seedy, commercial and cheap looking.   It was one place I did not desire to return, although I understand the Puerta is well known place for celebrated New Year's.

All in all, Madrid on the bus provided an interesting taste of places to which I must return (ever Sol).

Plaza de Canovas del Castillo.  Neptune Fountain.

Prado Museum

Puerta de Alcala

Iglesia de san Manuel y san Benito on Calle de Alcala

Salamanca  Calle Valazquez

Plaza de Colon
Monument to Christopher Columbus
with National Library in background

Madrid's Town Hall (formerly Palacio de Telecomunicaciones) in Plaza de Cibeles 

Bank of Spain Plaza de Cibeles

Plaza de Cibeles- Bank of Spain left
Metropolis Building right

Metropolis Building

Gran Via

Parque de la Montana  Templo de Debod

Palacio Real

Palacio Real and Plaza de Oriente

Teatro Real

View of Madrid fromViaduct de Bailen

Catedral Altamuda

San Francisco el Grande

Puerta de Toledo

Iglesia Catedral Castrense

Plaza de la Villa

Plaza de la Villa-
Torre de la Lujanes on the left behind the lamp
Casa de Cisneros straight ahead

Plaza Mayor

Old Post Office Puerta del Sol

Near Puerta del Sol

Near Puerta del Sol

The Fad of Being Vegan?

After I finished my first round of chemo last year, I thought about becoming vegetarian as a way to get more plant products into my body to be healthier.  I took the leap after reading Jonathan Safran Foer's book Eating Animals, which convinced me that factory farming and fishing are the critical cause of environmental damage to our planet as well as a key player in abuses of migrant workers.  Foer argued that going to sustainable local farms for animal products was not good enough because there are really no remaining local slaughterhouses, leaving you to be part of the process of the abusive, environment damaging Big Farma anyway.  And animal byproducts, like eggs and milk are almost impossible to find except through Big Farma.  As a result Foer became a vegan--eating no animal products or byproducts (including fish who are particularly devastated by current fishing methods or fish farming methods).

I did not think, however, that I could give up eggs and dairy.  I do not want to drink soy milk, given the debate about the effects of soy on cancer.  One of my friends with breast cancer says her oncologist told her last year to stay away from soy given the alleged effects of estrogen.  So she drinks almond milk, which I must say makes me shudder at the thought.  I walked out of a cancer survival cooking class I took several years ago (ironically before I found out I had cancer) when they wanted us to try different types of nut milk.  I hate flavored coffees and the thought of putting nut milk in coffee (or in any food other than maybe a brownie mix) disgusts me.  As for eggs, I do not eat them that much anyway but they are one of the few things I can stomach when I am doing chemo.

However, it is hard to find sustainable dairy products and eggs.  The eggs you buy at Whole Foods or at the farmer's market are factory farmed.  The closest place I could find to get pastured eggs (eggs grown on a small farm where chickens eat their intended diet and really roam free rather than being enclosed in some manner) is about 15 miles away.  I recently also found out that one of the organic milks I have been buying is factory farmed.

Moreover, I fret about the processed foods that seem to make their way into vegan diets.  I am not talking about potato chips like the Los Angeles Times article recently crowed to show that veganism is not necessarily healthful.  I am talking about soy isolate protein, aka textured soy protein or TVP,  as featured in some recipes by superstar chef Tal Ronnen on the new Ellen Degeneres vegan blogsite.  The health benefits of TVP are questionable to say the least.  I personally like to stay away from it.  I also am skeptical of vegan cheese like Daiya which contains "pea protein" but I have not really looked into that issue much yet and on a quick look it appears to be less problematic.

Which brings me to the title of this post.  All of a sudden it seems that the news is covering a number of famous people embracing veganism.  Bill Clinton, for example, this past week talked about his vegan diet.  There is the new Ellen site as referenced above.  Tal Ronnen is getting a lot of press for introducing Vegan dishes at Steve Wynn's request (Wynn is vegan) to Wynn's resorts in Las Vegas.

And vegan restaurants seem to be popping up all around me.  In Culver City near the studio, Native Foods has taken off, serving vegan comfort food.  Yesterday I went to the 3rd Street Promenade area to go to a vegan restaurant named Real Foods Daily (RFD) and was surprised to see a proliferation of vegan cafes.     Santa Monica is still filled with wealthy"progressive" chic people vying for space among the ubiquitous homeless people (some of which were getting a bit more aggressive than I remembered) and now the toney are flocking to vegan restaurants.  Indeed you have to have money; my enchiladas meal with a drink at RFD cost $25. (However, if you want to cook at home see Eat Vegan on $4 a Day.

So, as Malcolm Gladwell would say, is there a tipping point toward being vegetarian and vegan?  Have I decided to change my lifestyle at the same time many other yuppies of my generation have?  It gives me pause but in the long run, I do not care.  I am happy with my decision to embrace this type of eating and hope to be able to sustain it.

You say To-lay-do and I say To-lee-do

Since I am a diligent (read "demented") worker and, for reasons I do not really understand, I decided I could only tack three days onto to my July London business trip for personal travel, I had to make some stark choices about where to go this year. I had never been to Spain and started to look at options of where I could spend those three days.  Notwithstanding a warning that I would be there at the hottest time of the year, I decided to go to Madrid and take a day trip to Toledo to get a feel for an older Spanish town. Toledo is about 40 minutes away on the Renfe (AVE) high speed train from Atocha Station in Madrid which itself was about a 10 minute walk from my hotel, the Westin Palace.  The trains run fairly regularly so I planned to go to Toledo early on the second day of stay in Madrid, hoping to avoid the midday heat.

Unfortunately, one more change in time zone kept me up late and caused me to sleep until almost 9:30 a.m.  I saw there was a train at 10:20 so I raced out of the hotel, grabbed a coffee and sandwich and headed off to Atocha Station. The Atocha Station, sadly now known as the scene of the 2004 terrorist attack, is a beauty.  The interior is a parksize greenhouse where people can sit on benches and enjoy the almost constant water spray on what seem to be tropical plants.  I arrived at 10:00 a.m. and made my way to ticket sales area where there were three lines open and about a dozen people in each line.  Normally I figured that would be no problem but Spaniards seem to take a long time when they are purchasing tickets-- apparently discussing every nuance of price and what you are getting for your Euros. (I noticed the same thing in the Prado when someone was renting one of those audio tour devices).  So every transaction took much longer than it should have taken and I arrived at the desk 10 minutes after the train had left. (It was sold out anyway).  The next train was two hours later so I purchased round trip tickets, never wanting to stand on line again.

With two hours to kill, I headed to the Reina Sofia which was across the street from the Atocha.  I will discuss my Madrid museum-o-mania in a separate posting.  I made the train on time and sat across from a young Spanish man whose presumed girlfriend kept ringing his cell phone every two minutes.  After a few bars of something like "You are a sex machine", he would hit the off button and two minutes later the process would start over again.  Eventually he answered, saving us all from obsessive compulsive girlfriend behavior and a very bad ringtone song.

Once in Toledo, I hailed a taxi and was taken to Plaza de Zocodover, which my Lonely Planet tour guide book recommended as the starting place for a walking tour.  I walked around the Plaza and took a picture of  Arco de la Sangre but instead of heading through the old Arab wall gate down to the Alcazar (which supposedly had wonderful views of the Rio Tajo which surrounds Toledo) I wandered off in search of a vegetarian restaurant off the Plaza.  Taking the first of many wrong turns of the day, I wound up on the Calle del Comercio, which is the main shopping street--not the place you want to visit at the beginning of your walking tour of a city when you are already lugging a heavy camera bag.  I resisted the gorgeous authentic Talavera pottery (the Latin American version is named after the craft made in Talavera la Reina, outside of Toledo) and made my way to the Catedral de Toledo.  I did not go inside unfortunately given the short amount of time and energy I had.  And I still needed to eat lunch.

After wandering around back streets for a while, I found a restaurant named Palacios which was in my guide book and located on the map in an entirely different place than I thought I was.  By now it was almost 2 p.m and I was hot and very hungry.  Palacios served the best gazpacho I have ever had -- perfect for the hot dry weather of that region of Spain.  I also ordered various tapas which wound up being too much food but delicious and suitably vegetarian.

When I left I headed toward the Jewish quarter of Toledo and got lost once again with everything closed up for siesta.  Luckily I found myself on top of a hill above Monastery San Juan de los Reyes where I got the view of the Rio Tajo I missed earlier.  Across from the Monastery there was a shop open where the proprietor was watching the Tour de France.  I talked to him in my pidgen Spanish, took advantage of the cooler air for awhile (it must have been over 100 degrees F outside) and decided to buy from my new friend souvenirs, including a faux talavera bowl which was "signed" but was clearly too inexpensive to be authentic.  At least it didn't say "Made in China".  The proprietor gave me directions to the Sinagoga del Transito which was right down the calle.  Unfortunately it was closed and I could not muster the energy to tour the El Greco museum next door.  Instead, I called a cab and returned to the train station where I enjoyed the wonderful decor inside and then relaxed with an aranciata in the outdoor cafe while waiting to return to Madrid.

One last note.  The trains in Spain have metal detectors like we have in airports and one poor tourist was not allowed to bring on the train Toledo swords she had bought in the store at the station.  Why do they sell them there if you cannot take them on the train?

Inside Atocha Station

Plaza de Zocodover

Arco de la Sangre

On or near Calle del Comercio

Approaching Catedral de Toledo

Catedral de Toledo

Palacios Restaurante

Oh no!  It's siesta time and I am lost

View of Monastery San Juan de los Reyes and Rio Tajo

Monastery San Juan de los Reyes and the store where I rested

I love these Arab influences in the buildings

Sinagogo del Transito

Interior Toledo Station

Interior Toledo Station

Waiting for the train and drinking aranciata

El tren