Blog from Bethesda and Beyond: 7-13 to 7-15-10

Dear friends: Thank you for your interest in our blog!

Today, July 13, is a big day. It’s Ana’s 3 year re-re birthday! In 2007, on July 12, she called me at 4PM and shouted on the phone, “I got called! I got called!” She was in a wheelchair at the time, sucking on 5 liters of oxygen. Her surgery started around midnight on the 13th. May God bless her donor family these days… And now, who would have imagined with her second gift of life she would be living so well and so hard 3 years later?? And now, we were about to embark on yet another adventure around The Power of Two!

The last 24 hours were mind boggling. I flew to Washington DC using the last of my frequent flyer miles, together with my husband Andrew, and the entire gang that joined us for our Japan Tour (except we missed Ashley!): International Projects Director and childhood friend Naomi Takeuchi, Director/Producer Marc Smolowitz, Director of Photography Nickolas Rossi, Direction Manager Matt Rome, Photography Assistant Manager Yasu Higuchi, and our newest member of the Power of Two team, Development and Outreach Coordinator, Dan Roth.  This motley crew of uber dedicated members met at 6:45am at SFO airport.  We are so grateful for frequent flyer miles and our friends who donated their miles for this trip, making it very affordable! We boarded a plane that included Congresswoman Anna Eshoo (who is our Representative) and our northern district’s Congresswoman Jackie Speier, a huge supporter of organ donation. I spent the 5 hour flight cramming by reading biographies of the impressive people Marc would be interviewing, and being blown away by Dr. Francis Collins’ second book, “The Language of Life: DNA and the Revolution in Personalized Medicine”. Everyone must read this!

We arrived and our tour coordinator Dan rushed to rent a 12-seat white van, and without much effort we piled in with our gear, including a body-bag sized lighting box and huge silver case holding camera gear. In about 45 minutes we arrived at Arlington Road in Bethesda, Maryland, at the much recognized Cystic Fibrosis Foundation. Our crew piled out of the van and inundated the front office of the CFF, but were kindly greeting by our hosts Laurie and Deeanne. Dr. Bob Beall, the CEO of CFF for the last 20 years, greeted me with a hug and a “Hi, stranger!” I was honored.

While the crew got ready, we checked out the office, with the many framed articles from Science Magazine in 1989 when the gene was discovered, or other prominent memorabilia from the last decades of prominent milestones in CF science. The crew was invited to set up in Dr. Beall’s office which opened up to a forested creek path. I admired his family photos and many books and awards in his office.

Dr. Beall was running around finishing up his business. I wanted to sit and chat with him but didn’t want to get in his way. He had to get up very early and kindly offered to stay for our interview at 6PM.

Dr Beall and I managed to sit quietly for a few moments- I gave him an antique rose tiepin that I found that was perfect for him. He said, “I don’t want people with CF to have transplants; we want to find something better for them. You know there are no guarantees. We’re going to find something better soon.” He discussed the progress, which of course I knew about but reiterated that my friends with 30% capacity couldn’t really be helped with these treatments. I wanted to tell him that some of my friends can’t wait for the “cure”- they need help now, and transplants are the only way to stay alive. In a second, he stood up, asked if the crew was ready and my brief conversation was over. I felt saddened, like he dismissed my survival or the survival of so many of my friends who are post-transplant. It felt like I represented failure to him; what a sense of responsibility he must feel. Of course I want a cure, of course I want the young generation with mild disease to never need transplants because a better treatment is available, but it felt like Bob Beall represents young kids who still have 80-100% lung capacity, and their futures are open with possibilities.   I hope those kids live a long full life, much better than mine.

So feeling a bit dismissed I joined the non film guys and went to the ramen store downstairs for dinner. It was just like old times- the Power of Two tour gang together in a Japanese restaurant, slurping on salty ramen and asking for more water. After dinner, we returned to CFF, chatted at length with the very helpful and warm Deeanne and Laurie. It was nice to connect with people who ‘get’ CF.

The interview ended and the guys ate sandwiches in the CFF Executive Room. We said our thanks to Dr. Beall, and bid our goodbyes to this warm, welcoming group. I used to think CFF was inaccessible, purely administrative, higher-than-patients, but I was so surprised how easy it was to meet and interview Dr. Beall.

When we exited the office, it seemed the sky had opened and we hit a downpour. After turning the corner, we hit a massive deluge of rain I’ve never seen in California. The roads turned into rivers and we Californians had a cow in the van, driving slowly in the lightening and deluge. We got back to our hotels: the guys stayed at Days Inn in Woolsey Park, and Andrew, and Naomi and I stayed at the Bing Stanford In Washington (SIW). Thanks to friends we knew there, we were lucky to stay for 5 days gratis. Our room was a gorgeous apartment, that apparently was used by Gerhart Casper, Stanford’s German American President in the mid-90’s. Real hardwood furniture, two full bathrooms, a flatscreen TV, a gorgeous kitchen welcomed us. We settled and struggled to fall asleep around 11pm, or 8pm California time.

The following morning, Wednesday, July 14, we woke up painfully early to pile into the white van that pulled up across SIW by the National Zoo. Oh, if only I had time to visit the pandas! Instead, we head to the National Institute of Health, which of course, was much more exciting. Down we drove close to CFF again, to Bethesda. After a few wrong turns, our driver and tour manager Dan maneuvered the van with a few illegal U-turns, to finally end up at the correct entrance to NIH. We had to stop, get out of the van, pull out our gear, hand over our IDs, and then go through a metal detector.  The byproduct of 9-11 even affected the NIH.

Half an hour later than planned, we entered the main NIH building and were welcomed by the media director Calvin Jackson(who incidentally was a bone marrow donor). The crew brought in their goods and we were escorted to a nice waiting room. The halls were decorated with formal portraits of the past Directors of NIH, including the first woman, Bernadette Healy, in the 1990’s. These were the brightest and highest of physician researchers, and here I was visited the most famous scientist in Cystic Fibrosis history, Dr. Francis Collins.  As you may know, Dr. Collins discovered the CF gene in 1989 with Dr. Lap Chi Tsui. He was then the Director of the Human Genome Project from 1997 to 2008. He wrote two profound books, “The Language of God’ and “The Language of Life.” Ana and I were humbled and honored to be mentioned in Chapter Two of the latter book! So, as the guys were setting up, Andrew, Naomi, Dan and I went down to the NIH Cafeteria and had a supplemental breakfast to our Starbucks coffeecake. What a special moment! I ate NIH bacon and eggs! And I used their toilet, which oddly, at this great health institution, did not have toilet seat covers!

After much hanging out, I saw Dr. Collins enter the building and rushed up to greet him. As usual, he was warm, welcoming, asked about my health, and was just such a gentle, loving man. He went directly into the filming, which lasted about 45 minutes. We “extras” waited in the waiting room, perusing Science, Nature, and JAMA magazines. Marc Smolowitz, our Director, was extremely impressed with his interview.  Dr. Collins gave an awesome overview of the Human Genome Project, the CF gene discovery, the NIH goals and his role, as well as how genetic research has allowed new therapies to be developed for CF as well as other diseases. I was able to greet him once more, offer some little gifts and share a few words about Japanese CF patients. Then Dr. Collins rushed off to do many more important things, and Mr. Jackson took us to the National Human Genome Research Institute. What an amazing place! I can’t believe little ol’ me, with our film crew and Andrew, were kindly offered a little tour of the Human Genome Project lab by a Mr. Mike U., who showed us a computer with spikes and lines of A, T, C and G’s– the famous gene sequencing process that allowed the 1600 CF gene mutations to be discovered. This particular place was looking at the genes for Type 2 Diabetes in Finnish blood samples (because Finnish people are the most homogenous (genetically similar) people on the planet, and their government and culture makes it easy to conduct research- Americans have too many policies and money requirementsL). Mike explained the long spikes and short spikes indicate gaps in the sequence, and he is looking for patterns among the cases of Type 2 diabetics.  

Some of the science was over my head, but I wish Ana was there- it would have been an easy explanation for any genetic counselor. Unfortunately, she had to work that day! We met a lab scientist who is pre-med; she had a cousin with CF, and dedicated her life to medicine and genetic research. Mike and her were studying Progeria, a devastating genetic disease that causes children to age rapidly, and the life expectancy is only around 12. The gene was found 4 years before; when a regular medicine (already approved) was found to help the genetic defect. So, in only 4 years, children were receiving a promising treatment that was helping them clinically. This is the greatest example of genetic research that offers rapid clinical therapy.

After NIH, we rushed in our van to Johnson and Johnson in downtown Washington DC. We had a relaxed sandwich lunch while the film crew interviewed Dr. Kenneth Moritsugu. Dr. Moritsugu has been the Acting Surgeon General in 2006-08, and also was Deputy Surgeon General in California for the previous 12 years. He is famous in the California Transplant Donor Network world, because sadly, his wife died in 1992 in a car accident and became a donor, and his daughter died in 1996 in a separate car accident and became a donor. He is a powerful spokesperson for the minority organ donation, especially for the Asian American community.

Dr. Moritsugu offered us generous time and attention; and gave Marc such a powerful interview. We are so grateful to have been allowed to interview Dr. Moritsugu. After the interview, he stood with me for another 20 minutes and just chatted. He explained how HE is the beneficiary of organ donation, because every time he gets to say the name of his wife and daughter, although it has been nearly 20 years, they are still here and remembered.  I was so moved, because we recipients are SUCH THE BENEFICIARIES of the donor families.  This man is just an angel; after all his pain and loss, he still gives and gives to the transplant community, and holds such a special sentiment towards his organ donation experience.

Following this full and impressive day, we head out to rest at our hotel. Ana and Jennifer Schmidt were arriving from San Francisco, and we rested until they arrived. Finally, our group of 10 was united and the gang was “all together”. We went to a moderately good Indian restaurant, and crashed out early at night.

I was blown away and overwhelmed to meet such remarkably distinguished individuals in the last 24 hours, because we are just patients, after all. God Bless America, for having such accessibility to our prominent figures.  I felt a great ambivalence in prior months as to whether a film shoot in DC was actually necessary, but this day I felt fully sure that it was the right thing to do to make our film as comprehensive and informed as possible.

On Thursday morning, our permits to film on the steps of Capitol Hill were denied, and this allowed us all to sleep in for another hour, but we met the van at 7:30am nonetheless. With loads of equipment in the van, 10 happy individuals wearing our Sunday best, we drove to the National Capitol Building where our Congress meets. Dan had planned everything to a tee. We entered on the side entrance, and sadly had to dispose of even our Nalgene bottles that we could not bring in. I protested about my diabetes, otherwise they would have taken away my candy as well. We found our way to a briefing room, set up the film stuff, and waited for the 10AM briefing to begin. We carried in our tablecloths that we went out of our way to rent, only to find the tables already had cloths on them—this was our biggest disappointment. Our event was hosted by the Congressional Asian Pacific American Caucus (CAPAC), with our San Jose Congressman Mike Honda, a Japanese American as our supporter and member of The Power of Two Advisory Board. I felt nervous because by 9:55 only 3 people were in the audience. Then at 10AM sharp, at least 2 dozen people joined at the last minute.

The emcee was Mr. Lloyd Asato, a leader of the Asian & Pacific Islander American Health Forum, who was connected to us through Yul Kwon. Yul was speaking about bone marrow donation; he won a Survivor season (Cook Island) and is a Deputy Director of Federal Communications Commission.  Rep. Mike Honda opened the briefing, glancing at his talking points, quickly picking up the topic at hand. He said, “I guess I should check my driver’s license and sign up to be a donor,” and I was shocked he already wasn’t a donor.  But he told a touching story about his brother-in-law, who was typical Japanese and a bit fatalistic, after his diabetes progressed and he needed a kidney transplant. He wasn’t sure he wanted a transplant but was encouraged to pursue it, and sure enough eventually he received a kidney and is doing well today. Congressman Honda pulled off a touching meaningful brief speech that encouraged the issues that we supported- health in all Americans, organ donation, and special attention to Asian Americans. He was warm, attentive and genuinely interested, so he stayed for our entire speech, despite his staffer pushing him to leave.

After Honda, Marc Smolowitz showed the Power of Two trailer, and gave a few remarks about why he is doing this film. He shared how fortunate we are to have access to a government that listens to the people and allows ordinary individuals to come to share their concerns with legislators.

Following Marc, Ana and I gave our 16 minute speech(Ay vey- 1 minute over our allotted time), which I wrote and Ana edited, and we both argued incessantly once again to work together to make a coherent piece. We rushed but told our story(though I accidentally turned off my mic), how hard it was to be shy and passive culturally Japanese patients who had to come out of our shells and speak up, then evolve into outspoken, public advocates, specifically for the Asian American and Japanese communities where organ donation is not embraced. Did you know 8% of our waiting list is made of Asian Americans, but only 2% of our organ donors are Asian? Asians(and Hispanics) are 3 times more likely than Caucasians to have kidney failure!

We were especially proud of our summer business suits- Ana went to the Goodwill the day before our trip, and found a blue suit for me, and a green suit jacket for herself (with a brown skirt), so we represented the Donate Life colors! We looked sharp, and hopefully gave a sharp speech. I ended by addressing Mike Honda and telling him directly– not Asian-style– to sign up to be a donor. He apparently did on the side of the room, when I didn’t notice. So that was captured on camera and was a great moment.

After us, Political Fellow Corinna Dan spoke about the Asian American hepatitis B epidemic that is entirely preventable. Hepatitis B is 100 times more contagious that HIV, and a truly silent killer, causing liver failure and liver cancer in 25% of its victims(more if an infant is infected).  It is the 6th leading cause for liver transplant. Then Yul Kwon gave a personal and remarkable speech about bone marrow donation among Asian Americans. His lifelong best friend had leukemia, and sadly couldn’t find a bone marrow match and died. Yul has become an active advocate for Asian American bone marrow drives. He was so eloquent and validated what I wrote in my speech- the great challenge of an entire race of people whose culture it is to remain quiet, not rock the boat, to accept things as they are, but to push oneself and move out of that passivity into a more proactive role for the greater good. We ended the briefing with a few very good questions from the audience. I was touched that two young interns from the Navajo Nation were there to learn about organ donation and how it might impact the Native American community. We also had a super-enthusiastic African American journalist from Internet Celebrity who wanted to feature us in her column.  All colors of the human rainbow were represented, because chronic illness, patient advocacy and organ donation are issues that affect all of us, and, sadly, the darker your skin the more likely these health issues are relevant.

We left the Briefing satisfied and uplifted.  I was alive and telling people why. People in all walks of government life heard us.

Off we were to visit Congresswoman Zoe Lofgren, who represents the district right by Mike Honda, south of San Jose. The crew had to drag out their heavy equipment outside, where it was painfully hot. It felt like an oven, and was suffocating. Luckily, we only walked across the street, but that was enough to soak the clothes and smear the makeup. Nonetheless, the film crew set up with Rep. Lofgren, and we enjoyed a brief 20 minute warm interview with her. Lofgren sits on the Cystic Fibrosis Caucus, a group of about 150 Representatives who support research funding, support newborn testing, and support healthcare policies that benefit people with CF. It was great to ask her about her involvement and share what we were doing with the film and project.  She shared her support for the latest Health Care Reform bill, which hopes to help many people with CF across the nation. She was very, very busy, and amazingly was able to switch off from her activities, sit in a chair for a discussion, and then immediately go back to her duties in her office. She was briefed on our visit but I don’t know how she could possibly absorb all the information about CF and transplant that we hoped to share. Nonetheless, I was grateful for her time and glad to meet and greet another one of our legislators.

Next the starving crew went to the Capitol Hill cafeteria, and all our hopes for health advocacy went down the toilet- literally- when we saw they served hamburgers, hotdogs, chili, Philly cheese, friend chicken strips, French fries, fried broccoli, fried potato skins, fried onion rings, fried zucchini, and cold cut sandwiches. It was a disgrace to our nation’s costly Health Reform Bill—the efforts must start here at Congress! There was no water to be found. It was disgusting food, and Naomi, Yasu, and Ana and I rolled our eyes at the thought of another boring American sandwich. We love the food in Japan so much more!!

After a nice relaxing lunch, the guys went to Dr. Howard Koh’s office at the Department of Health and Human Services. Dr. Koh is Korean American Assistant Secretary of HHS, and has supported minority organ donation in his work. Again, Yul Kwon connected us. However, only 5 people could enter HHS, so Naomi, Jenny, Ana, Yasu and I returned to the Stanford In Washington via taxi to relax and recover from the big day. It was so fun just to hang out with our lifelong friends, whom we had played with as infants in diapers. This is such a gift of this film! Jenny—a longtime film professional– is now our Associate Producer, and Naomi is our International Projects Director.

After enjoying sorbet and sitting down for an hour, we got ready to go to Genetic Alliance’s film festival by 6pm, called “Gene Screen,” at E Street Cinema. The theater was cool, and I looked forward to a relaxing seat watching movies. Genetic Alliance invited Ana, Marc and I to participate in Webinar in late May about “Genetic disease in the movies/social media.” They are strong advocates for awareness and funding for rare genetic diseases. This is one amazing little organization!

The first movie we saw was “In My Hands”, a powerful documentary about Marfan Syndrome. Wow. The struggle that kids with Marfans have truly is parallel to that of people with CF! And then we saw several short clips – “Mito-kids” about a family with 4 children with mitochondrial disease; “Jewish Genetic Disease” about several families with Jewish genetic diseases and the urgency to screen for them and “prevent them”; and then finally “In Beauty”- a powerful, powerful short film about kids with Chromosome 18 disorder who are photographed, model style, by Rick Guidotti from Positive Exposure. Rick takes photos of special needs kids, and makes them beautiful. I loved his quote, “When I take pictures of albino or Marfan kids, everyone who looks at them says, “You really captured their inner beauty. Well, fuck inner beauty! These kids AARRREEE beautiful in their own right.” A genuine wise and loving soul. I highly recommend you to see these amazing flicks, that portray life with genetic diseases much, much harder/worse than CF. Our Power of Two trailer was shown; and Marc, Ana and I were on a panel afterwards, and I felt like we didn’t have a right to portray genetic diseases because we looked so normal, had such normal lives(compared to the kids with seizures, mental delay, etc), and are almost free of disease post-transplant.  What do WE have to say?!?! The family struggle with 2 kids have severe cognitive delays and 2 are hearing impaired; or the kids with chromosome problems that truly look and talk differently; kids with severe Marfan who have difficulty walking and moving; those were some intense stories that really twisted my heart into pieces. But the films were very well done. A number of people rushed up to us afterwards to talk about our trailer, CF, organ donation and just offer nice words of encouragement. I was honored to be in the position to touch them in some way.  In the van on the way home, we had a lively debate amongst the guys about how we felt about the movies; what bothered us, and what we wanted to see differently. We ordered a late-night pizza, ate way too much, and my exhausted depleted body slept on two pillows to keep it down.

More to come. Thanks for reading about our DC adventures. I am touched by your interest. God bless America!– Isa

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1 Comments to “Blog from Bethesda and Beyond: 7-13 to 7-15-10”

  1. do you have facebook?

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