Newsletter HIROBA

Newsletter HIROBA□

2010

2010. May

1May

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contents
Proposal for Revision of Medical Expenses Refund System .......................................................................... NPO “TSUBASA” 1P
On Participating in the 7th International Conference of CML/GIST Organizations ..... Mr. Hidehito Tamura, Ms. Reiko Kamata 2P
Coffee Time .................................................................................................................................................... Akiko Hashimoto 9P
A Hematologist of Tomorrow : A Hematologist who manages to Understanding Medicine
and the Most Advanced Medicine at the same time. It’s my Goal. .................................................................... Takahiro Shima 10P
A Personality (A Pony) : A hard Worker loves Children smiling ................................................................ Ms. Obana Ogawa 12P
A Relay Massage : It’s only one Wish “ All Patients Achieve Victory for Well-being” ................................ Tatsuo Hoshizaki 14P

Proposal for Revision of Medical Expenses Refund System

NPO “TSUBASA”

We announced that we opened the campaign for revisionof medical expenses refund system on Dec. 3rd, 2009.
The campaign named “the Liaison for Advocating
Revision ” was organized by collaboration of threegroups, “The Group of Myeloma Survivors Japan”,“Izuminokai – the group of CML survivors and families”
and “The MDS Liaison”. We held a press interview on
the same day as well. Many people read the articles about
this campaign, we imagine.
There is no question that the refund system for large
medical expenses has been relieved hundreds of patients.
It is very helpful that anybody can receive a refund of the
medical expenses that is over \80,100. Nevertheless, it’s
still hard to pay \80,000 every month. Besides, the upper
limit on the self-pay has been getting higher and higher
without any clear reasons.
We propose an urgent motion to revise the medical
refund system toward more supportive one under such a
bad economical situation. And this proposal is not only
for cancer patients but also for any other patients withserious diseases. We realized its importance throughactivities hearing from thousand of patients for a longtime.
“The Group of Myeloma Survivors Japan” points out
a problem. Some drugs which are indispensable for
myeloma patients but cost slightly under \80,100 can’t be
subject to refund. “Izuminokai” emphasizes that Gleevec
saves their life, but it threatens their daily life becauseof medical expenses the other hand. The representativeof “The MDS Liaison” says, “We have to struggle withnot only MDS but also payment for drugs right after the
diagnosis. We eagerly expect quick new drug approvals
but we have to be afraid of the price of them at the sametime.”
Here again, we advocate the need for revision of medical
expenses refund system. Revision must be encouraging
for all patients ﬁghting with serious diseases. We need toknow how to promote this campaign and make it succeed.
“The Liaison for Advocating Revision” needs to collect
your ideas, advices and opinions. We aim at “ Better
Future, No Financial Worry ” for all patients all over theworld
We are holding a panel discussion for the first step asfollowing. We expect hearing opinions from many people.
May 9th Wed, 2010 (in the afternoon)
At Ibuka Hall , Waseda University“To get the high-tech medicine for patients quickly”
Open panel discussion “The path to medical expense
problem solution” (tentative title)
Sponsored by NPO Japan Clinical Research Support Unit
and NPO Tsubasa

2Newsletter HIROBA□

2010. MayNew Outlook for Cancer Treatment:

On Participating in the 7th International Conferenceof CML/GIST Organizations
Report on New Horizons 2009

Below is my memorandum on the conference. Titles are
originals.
26-1 Welcome

Mr. Hidehito Tamura
Association of CML Patients & Families IZUMIOverview
New Horizons 2009, a conference of representatives
from CML (chronic myelogenous leukemia) and GIST
(gastrointestinal stromal tumor) patient and support groups,
was held in Lisbon this past June 26th to 28th. I had the honorof participating in the event, and would like to report about
the conference here. New Horizons is a conference that started
in 2003 with participants from European and other countries,
where they report their understanding of the diseases, theoperation of organizations, current state of affairs in theirrespective countries, and so on.
The conference was great, and the fact that people with thesame illness gather together from all over the world itself
was incredible. There were three days of attending meetings,
seeing in person and talking face to face. Meeting topics wereimmediately useful, such as those dealing with knowledge
about the illness or organizational operation. I am extremely
grateful to have been given such a wonderful opportunity.
I probably have missed more than a few things, but I want
to stress that there was more to the actual conference. It is myintention to communicate what I experienced there for the sakeof better operation of the patient group.

This year's world conference had the participation of 126
representatives from 49 countries, of which eight attended forthe first time, including Lebanon, New Zealand, Tunisia, andUkraine. The meeting was opened with reports on the current
situations surrounding CML. Below is an excerpt in bullet
points:- 10-20% of patients have resistance or tolerance to imatinib- Sleeping stem cells are considered a cause for minimal
residual fraction- Three ways to change the sensitivity are: conventional
cytogenetic analysis, FISH, and RTQ-PCR- To screen for any mutation, bone-marrow puncture isnecessary once every two years, and RQ-PCR every threemonths- There is only one way to check if sleeping stem cells havedisappeared: cessation of medications- PCR results may vary among different testing facilities; if
the value has changed from the last results by one digit, it
should be considered a signiﬁcant difference; if the value has
increased, do the test again- There is an ongoing study to stop imatinib treatment inAustralia- ELN (European Leukemia Net) has also proposed a standard
for evaluating the effects of treatment after the initiation oftherapy, and suggested that appropriate methods of treatment
should be chosen- Third-generation drugs include: bosutinib, XL-228,
AP-24534. DCC-2036, etc.

Newsletter HIROBA

26-2 Building trust and confidence in cancer
patient groups- Governance equals input; input equals skilled work,
management, funds, and governance- Though its importance is often underestimated, management
and control is indeed critical- Three simple questions can draw answers to what the
management control is:
1. Is the organization doing the right things?
To make time to plan for the future; understand external
environment; understand its tasks, understand funding;understand risks
2. Is the organization conducting activities in the best way?
Whether or not the group is employing the best policy andmethods; using time effectively at meetings; documenting
issues appropriately; building effective team relationships;
utilizing appropriate outsourcing
3. Is the organization working with the right people?
Whether or not the organization is supporting committee
members; controlling the activities of committee members;
guaranteeing activities of high-level personnel; understanding
skills and perspectives required by individuals; using modern
search methods- What challenges are you setting to control your organization?
Do you have support and resources for these challenges?
* I think it is important to have governance in an organization.
How do you build it? There may be a number of factors,
but I think it is the organization's policy that lies behind
it. It is what the organization is centering on, and what itturns to as the criteria for judging its activities. Elementsof the organizational operation may include leadership,communication skills, and personality.
26-3 CML management update I
Where are we? Where are we headed?
- The initial IRIS study on CML (International Randomized
Study of Interferon and STI571) and 7-year follow-up- IRIS established imatinib as the standard prescription forchronic CML.

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2010. May

3

- The initial study had 1,106 enrolled subjects, about half ofwhom, or 554 subjects, currently remains in the follow-up
study.
- Of the 554 subjects, 545 subjects (98.4%) are treated withimatinib. (Of these, 332 take 400 mg daily as the first-line,
and 213 take it as a crossover from interferon/Ara-C). The
remaining nine continue on interferon/Ara-C.
- Nilotinib is a logically-designed, highly selective, potent
BCR-ABL inhibitor.
- Nilotinib has more ﬂexible molecular alignment against ABL
than imatinib, with about 30-fold efﬁcacy.

27-1 CML management update II- Sensitivity to mutation varies among different types of drugs- Mutation analysis at chronic phase- Is screening for mutation required in considering a secondline drug?
For dominant T315I mutation: a single-drug medication witha second-generation inhibitor has no role to play; allograft orexperimental treatment should be considered
F317L: nilotinib is considered more effective than dasatinib
E255V/K: nilotinib or dasatinib in a standard dose may not beeffective
Y253H: nilotinib is considered more effective than dasatinib- T325I mutation
TKI prescription has its limits; third-generation TKI iscurrently being assessed
Other prescriptions: interferon, omacetaxine, etc. should beconsidered; transplantation is appropriate- One should determine whether to increase imatinib or switch
to a second-generation drug based on the duration of drug
exposure and the remission status.
* Whether or not there is way to completely cure CML is,for me personally, a very interesting issue. To answer this,
it is necessary to discover the mechanism of sleeping stem
cells. The lower rates of relapse among those who have
had exposure to interferon before taking imatinib followedby cessation may provide a key. Testing quantitatively tomeasure the depth of remission with high precision is also
desired. It is my hope for a further series of courageous

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Newsletter HIROBA□

2010. May

trials to continue and for the research and clinical setting to
improve cure rates.
Cure CML- Definition of complete cure of cancer can be expressed asfollows:[Time] x [Absence of symptoms of illness](Absence of symptoms of illness clinically or molecularly?)- TWISTT = Time Without Symptoms, Therapy and Therapyrelated complications
Duration of time without symptoms and treatment- What is cure of CML?
- STIM (Stop Imatinib): project for ceasing imatinib
Started in July 2007, the project has 70 enrollees as of May
2009: patients with two year or longer continued molecular
genetic remission. Among 34 patients who ceased to takeimatinib for six months, 19 (56%) had relapse while 15 (44%)
were in the state of CMR.
- Interferon is effective in killing early-stage Ph+ stem
cells. This is probably why a favorable state after the
discontinuation of interferon therapy is maintained.
- Interferon may have an effect to wake up sleeping CML stem
cells.
- Ceasing imatinib may be possible in a few patients who haveundergone intereferon treatment in the past; however, its
success rates or durations of remission remain unclear.
- Prior intereferon therapy makes it easier for this strategy to be
successful.
- Studies on intereferon/imatinib have been conducted in
France and Australia.

27-2 Web communication, social media andpatients
On social media and communication among patients- 45% of Europeans use the Internet.
- For instance, Facebook, Twitter, and YouTube are utilized.
- Facebook is an SNS (Social Networking Service) createdfor students in the United States. The service was initiallyrestricted to student users, but it has been opened to thegeneral public since September 2006. There one can post
various classiﬁed ads or send direct messages to other users.
It also allows users to upload photographs or videos (Facebook
Video).
- Twitter is a communication service for individual users to beconnected by posting 'tweets'. Developed by the US company
Obvious (currently Twitter), the service was started in July
2006. Twitter has a system that is halfway between blogging
and chatting; individual users have their own site (home)and post a tweet within 140 letters in the form of the answer
to the question "What are you doing?” Each one of tweets
corresponds to a blog entry and is assigned a unique URL.
- YouTube is a company based in San Bruno, California in theUSA. It provides a video-hosting service on the Internet. One
can use the service free of charge. It uses a technology called
Ajax, and one needs to activate JavaScript to use YouTube.
Most of the videos can be viewed without membershipregistration, though there are some that are viewable tomembers only.
- Young cancer survivor networks- Every year as many as 70,000 people between the ages of
15-40 get cancer, and 10,000 of them have little probabilityof survival.
- There has been no improvement in the ﬁve-year survival rates
in the younger population since 1976.
- One young cancer survivor network is "i2y.”- Social media can connect strangers with one another, and help
raise their awareness.
- They can also strengthen roles of patient organizations.
- A major advantage of the Internet is that it allows one to workon tasks at home. However, there are tasks that one cannot
perform on his/her own, and it is important for him/her to ﬁnd
people who can help him/her, such as volunteers or those whoshare common interests.
- Issues over SNSs include that one needs to exercise caution
to avoid finding inaccurate or false information or when
discussing delicate issues, and that one should not bring up
religious issues, but handle creative issues.
- One should not aim for something grand to begin with; he/sheshould start from ground zero and build up experience.
27-3 CML case studies- During this session, several experts exchanged opinions on
ﬁve case studies.
- For instance, Case Study #5 was a 65-year-old male Ph+
CML patient. He was prescribed 400 mg/day of imatinib,

Newsletter HIROBA

and his Ph+ was 18% after six months of the treatment, and
12% after twelve months; what treatment would you give thispatient? The blood concentration of imatinib was measured
to be 560 ng/ml; what would you do to this? Also, this patient
was taking a herbal supplement (St. John's wort) every day;
what advice would you give him?
27-4 Interpreting clinical trial results
Lecture session on clinical studies from the standpoint ofpatients- There are 150 trials underway worldwide.
- How are data on adverse effects evaluated?
28-1 Building strategic alliance in CML- C. Jacobi: Patient groups should have relationship with frontline clinical doctors at a political level; it is important to work
together with doctors- M. Steagall (Brazil): Organizing workshops every twomonths; having 50 lectures available to view on the website- P. Garcia Gonzalez: First, patients should gather together, andthen invite doctors in, ensuring that doctors understand thatthey are partners; patient education is also necessary; nurses
should bridge the two parties together- M. Flielner: For 25 years, there was no system to collaborate
with patients; with some organizations, it was not clear who
their representative was, or which directions they are heading
towards; there was also an obstacle due to language barriersParticipants discussion about building strategic alliances for CML

28-2 Spotlight on CML advocacy activities
across the globe
There are approximately 40 CML patient organizations aroundthe world. At the conference, presentations featured those fromsix countries.
<Australia>- Every year sees approximately 250 new CML patients, manyof whom fight their battle alone. They are encouraged tojoin the forum, which consists of a 90-minute session on the□2010. May

5

theme of Talk Blood Cancer, intended to allow patients toshare their experience with the same illness and support eachother.
- For those who live in remote areas, there are groups thatprovide support over the telephone.
- CML telephone consulting is highly effective, not only
for long-distance communication, but to people all overAustralia.
<Latvia>- Some 150 CML patients are in need of Gleevec.
- In recent years the government has not increased
comprehensive ﬁnancing for pharmacotherapy; the same goesfor leukemia. Budget for health care service remains less than
3% of the GDP. A lawsuit was once ﬁled, and there were bothgains and losses.
- Only 30% of CML patients have been able to use Gleevec; thesituation is similar in Poland.
<Brazil>- There are about 5,000 CML patients.
- The treatment program was participated by 1,137, of whom
38 have subsequently died.
- 72% were treated with imatinib, 9% hydroxyurea, 7%transplantation, 4% dasatinib, 3% nilotinib, and 2%
interferon.
- 74% had at least a day of missed dose during the previous
month; 38% were forgotten doses, 34% for lack of the drug,and 4% was because they felt unwell.
- Data have been used to set the priorities at academic
conferences of the ABRALE (Associação Brasileira de
Linfoma e Leucemia [Brazilian Lymphoma and Leukemia
Association]).
<Venezuela>- In Venezuela, it is of high importance to secure funds to pay/pay for individuals.
- Most contributions are tied to respective programs, with
regional and general administrative expenses left uncovered.
- 30 volunteers have been trained and became able to cater topatients' needs.
- New networks for hemato-oncologists throughout the country
have been developed.
<Lithuania>- 180,000 signatures have been collected on the Internet.
- Promoting public awareness is a key to success.
- It is necessary for patients to play an active role in place ofdoctors in the media.
- International support for patient communities is also
necessary.
- Chance for CML patients to have access to imatinib was
16.5% in 2007, and 33% in 2009.
- Similarly, the change for GIST patients was 0% in 2007 and100% in 2009.

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Newsletter HIROBA□

2010. May

<Canada>- A 19-item questionnaire survey has been conducted on theweb.
- Efforts were made to raise interest in the survey through press
releases and international CML patient support groups.
- The Canadian CML association makes efforts to develop
benchmarks for CML patients not only in Canada, but
worldwide.
- 60% of patients are aware of the gap in information as to whatshould be done about CML-related economic burdens.

28-3 Meeting the challenge of adherence
Lecture on drug compliance- Results from the ADAGIO Study were reported in the May
28, 2009 issue of Blood, regarding drug compliance.
- Medication practice was not followed as much as had been
expected, prompting the necessity for routine checking.
- It is difﬁcult for patients themselves to solve drug complianceissues.
* Issues of drug compliance are not highly discussed in Japan,
and it might have something to do with the nation's seriousmindedness.

All our dreams can come true — if we have the courage to pursue them

What I Saw and Felt as a Patient

Ms. Reiko Kamata
Japan Tsubasa Association

Introduction
I had a chance to attend the CML/GIST-related international
conference called New Horizons in treating cancer held in
Lisbon, along with Ms. Akiko Hashimoto, president of Tsubasa,
and Mr. Hidehito Tamura, a representative of Izumi. The
following is my own recount of the event.
During the three-day meeting, sessions covered a wide rangeof topics, illness/treatment-themes to discussions about working
on challenges in leading a support organization. Simultaneoustranslation was provided in Japanese, French, Chinese, andRussian. At a conference such as this one where people from anumber of countries gather and try to work together, I think it
is highly important to ensure that participants from non-English

speaking countries are able to have an accurate understandingof what is being discussed and communicate their opinions
unhesitatingly, without being affected by any language
constraint. I think it was highly significant that they took
measures with consideration to such a major issue as language
barriers.
Discussions at Sessions- Health care
With regard to topics related to illness and treatment, we had
lectures from expert doctors on the latest treatment methods
and data. I found it very meaningful that they addressed topics
of high interest to patients. Of all, I was particularly impressedwith the case study session led by three expert doctors, inwhich each of them shared their candid opinions. Furthermore,
doctors and patients had active discussions as equals on such
issues as future measures for cure and ways to build systems ofcollaboration with doctors, and I found it very encouraging, andleaving a strong impression.
- Operation of an organization
In the session about working on challenges in leading anorganization, meanwhile, a range of suggestions concerningorganizational operation were made in line with the situationsof their respective countries. Particularly notable here was theNewsletter HIROBA

story shared by a European AIDS treatment group. They said
they had been having inﬂuence over drug approval, by getting
themselves directly involved in the planning of clinical trials,
lobbying pharmaceutical companies, and monitoring adverse
effects. It seemed really radical and interesting.
- International cooperation
Other than the sessions mentioned above, coffee breaks
between sessions and lunch and dinner provided us
opportunities for communication, and we, too, had a chance
to have a talk with participants from many countries. We
met people from China and Malaysia, and discussed that itshould be meaningful to build deeper not only worldwide but
regional ties as well. I think it will be wonderful if we can build
a cooperative relationship among Asian countries. We also
approached by some patients who had found us in a booklet
that conference participants received, in which we introduce
ourselves, complete with a headshot. That we had a chance tocultivate personal exchanges with individual participants mademe really feel a person-to-person connection; it was heartwarming. Through our meeting with patients from all over theworld, I realized everyone is facing their own illness, living
strong, and acting actively. It was really inspiring.
I realized through this conference that, in addition to thechance to have first-hand access to highly sophisticated andtechnical information, networking is also very appealing, inthat you come in contact with participants from countries
around the world and share experiences or achievements, or
discuss common challenges among different countries. Suchan opportunity will help discover new potentials in patient
support activities, providing a powerful force. As a patient, I
felt extremely grateful to have a venue such as this.
Having come across a wide range of information during
sessions or elsewhere, my trust in Japanese healthcare
deepened. For instance, latest healthcare information isconstantly obtained and passed on to patients, and we haveadvanced medical technology and healthcare settings, and asocial insurance system. I had a renewed realization that sucha state of healthcare which we enjoy and take for granted is infact something we are extremely fortunate to have. There aresurely a number of serious issues in Japan that should neverbe overlooked. Even so, it seems nevertheless reassuring torealize how reliable and secure certain things are, as we ﬁght
our diseases. Gaining various information can mean knowing
something new, while at the same time giving us a good
opportunity to re-examine how we perceive known facts.
About Myself
As a current patient of 17 years
I was diagnosed with CML in 1991 and received a bonemarrow transplant from my younger sister in the following
year. But I have since had repeated relapses, so I am still apatient to date. Since my diagnosis, I have received treatment□

2010. May

7

with two bone marrow transplants, donor lymphocyte infusion,
Hydrea, interferon, Gleevec, and dasatinib, among others, so
I can probably say that I have experience with essentially all
major CML therapies since the 90s. I have also experienced
a variety of adverse effects. Throughout this time, even the
period between a therapy and a relapse, I have never been truly
freed from the illness, not even for a moment.
After all this, I have felt and thought about a lot of things
as a patient. Some thoughts would change from time to time,
while others wouldn't. Even at the same moment, I might havecontradictory thoughts intermingled, so my mind has constantly
been plagued by all kinds of conflicts. What has remained
unchanged in my mind ever since the onset of my illness,
however, is that how important it is to have correct information,and how encouraging and necessary it is for patients to havecooperation with other patients and build a relation of trustwith people who support us (i.e. families, doctors, nurses andother health care providers, friends, among others), in ﬁghting
our illness. It is because I found it significant that Tsubasa
places an emphasis on providing information with support fromvarious sources that I have been involved in activities at thisorganization.
As someone with such a background, what I have felt moststrongly through my attendance at this international conference
was that the way I fight CML changed definitively. In otherwords, while what used to be “a ﬁght not to die” now seems tohave become “a ﬁght to live better” by all means.
In the past, being diagnosed with CML used to mean that yourlife would come to an end in 3-5 years unless you had a bonemarrow transplant. Thus activities to establish a bone marrowdonor registry were started in Japan, led by mothers who
wished to save their children. A bone marrow donor registry
was subsequently set up, and with an increasing number ofregistrants and advancement of treatment technology, theroad for CML patients to survive has broadened widely. Bonemarrow transplantation, however, is a gruesome and risky
therapy, and even if one's life is saved, it is not unlikely for him
or her to keep suffering severe complications or aftereffects.
Meanwhile, there have been cases in which interferon therapy
successfully maintains long-term remission, although there areissues of self-injection and adverse effects. Then came Gleevec,
opening up the path dramatically for CML patients to live longterm, while leading a near-normal life. There still remain issues,of course, such as adverse effects, resistance, and substantial
financial burden. For patients, there remains the hardship of
having to suffer irrational pain, and this still needs to be solved.
All the same, it seems to have made an enormous difference
that what was once a ﬁght fought solely for saving the life witha nearing death in view has transformed into one that aims tosecure or improve one's life or the quality of life, now on theassumption that he or she will be able to survive for a longtime. To me, it means that now we are able to live our life and8Newsletter HIROBA□

2010. May

believe in possibilities for the future, without abandoning allhope.

encouragement to ourselves, helping us cope with our illness
with more strength.

- Fellows from around the World
Such was what made an imprint on my mind as I experienced
the sessions and saw other participants doing their activities
with strength and vigor at the conference. It was such a
dynamic experience.

This also leads us to have a renewed realization that inorder for patients to obtain a 'better treatment', links among
patients ourselves and cooperative relationships with doctors
and other healthcare providers are both important. Needlessto say, patients' families and many other people who help
patients in many ways are all essential, important beings, too.
They all worry about the illness that plagues the patient, andshare the same wish that he/she will be better. However, we
all live different lives and have different backgrounds, and it
is impossible for us to have an exact identical thought, even if
you stand at the same position (such as a position as a patient),
let alone among different positions. So it will be extremely
important that we recognize what are common and what
are different between one another, and strive to respect andunderstand with each other. Then, if we can work together handin hand, this will become a signiﬁcant force.

Now I look back like this: I think the conference showed usthat knowing and cooperating could empower patients to face
their illness and live stronger.
Patients suffering an illness are forced to make all kinds ofdecisions in all kinds of settings, and I think it will help us
to know what we bear on our shoulders and what we must
confront, in our making choices and taking measures thatare right for ourselves. It has now become easy for patients
to obtain information on various issues including the latest
healthcare information, thanks to the advancement of theInternet, etc. To understand it correctly, however, you would
need expert assistance. In the meantime, there are issues thatare significant to patients even if they are not the center ofattention in terms of healthcare, and having some forerunnerpatients who have already gone through such issues might help
in dealing with them.
It may also be significant for patients to address directly tohealthcare providers and communicate what we really need andfeel about things, to build better healthcare and a better future.
Furthermore, telling stories about our own experience as apatient might allow us to share feelings with other patients, orpresent ourselves as a fellow or a forerunner to others suffering
loneliness, which alone can be helpful. Patients are supported
by many people. And yet, if patients ourselves could be of ahelp to someone, even if only a little, it will in turn empower
us and help keep us alive. When I think of myself, I used tosee myself as someone who could do nothing but be helped byother people. In addition, I remained uncured forever, despite
receiving transplants twice. I thought I was only making other
patients (especially those who have undergone transplantation)
anxious, and I felt myself being good for nothing. It seemedthat I should better stop having contact with other patients.
Then I was made realize that there are patients who found it
rather encouraging that someone like me, who has had so many
relapses, could still be alive and well. This in turn became mysalvation, and gave me strength. There were some patients atthe conference who told me the same thing, and it was reallyencouraging to me.
I think that the existence of a countless number of ourforerunners before us has made the foundation of medical
advancement and thus supports us today. If we, too, can makeour experience be of a help to someone else, it will be a further

Conclusions- Medical advancements and cooperation
As I have described above, I came back from the conferencewith a realization of medical advancement in every term. Not
only the breathtaking progress in medications but the way how
one ﬁghts his/her diseases has made truly strong developments.
Such phenomenal developments have not only been possible
because of patients' sincere wishes, efforts and endurance, but
the existence of devoted providers of health care, those who
engage in the research and development of medications to curediseases, social understanding, and families and friends whoheartily support patients. I could not help but think over thisagain. In order for patients to have support and live better in atrue sense, I believe that we must trust and respect one anotherand work together.
- Drug discovery and trust
This international conference was held with the sponsorshipof Novartis Pharmaceuticals. I've heard that Novartis takes a'patient-centric' approach, and places a focus on understanding
the needs of patients and building a better relationship withthem. From the stage of preparing for the conference, we havespent a large amount of time with people from Novartis, andhave talked and exchanged opinions throughout. Being given achance to exchange opinions and communicate patients' voice
directly with those who engage in the development of drugs
that treat our illness, I think, was utterly meaningful, and madean extremely rare opportunity. Above all, it will be the mostimportant to share a goal of 'having better treatment provided
to patients' and build a trust-based relationship.
- In a beautiful town
Between our meaningful and fulﬁlling time at the conference,
we had a chance to look around the town of Lisbon and its
beautiful suburb Sintra, as well as Cape Roca that forms theNewsletter HIROBA□

2010. May

westernmost point of the Eurasia continent. Located in thewesternmost part of Europe, Portugal has had Islamic inﬂuenceand successfully accepted different cultures, through which
it is said to have nurtured its flexible and generous culture
over the period of its long history. Such a blend of different
cultures and generosity was reﬂected in the atmospheres of thetowns, buildings, and many artworks. It seemed to be a mostappropriate venue for an international conference in whichpeople gathered from many countries and aimed to realize
differences among countries and their respective state of affairs,
to learn from one another and adopt what is good from others,
cooperate and work together to pursue happiness for all people.
It is my hopeful wish that patient support organizations allover the world will work together so that we can all face ourillness with more strength, and that medical and pharmaceuticaldevelopments will further continue towards the goal ofcomplete cure.

ńŰŧŧŦŦġŕŪŮŦ
I was filled with deep emotion during staying in Lisbon. A
lot of people from all over the world got together for the CMLinternational conference. Most of them were survivors of CML andthey participated in their rolls vigorously and happily. It should far
exceed my imagination that CML patients could enjoy their life bytaking tablets, if I were in several years back.
I remember a conversation with friends when the Bone Marrow
Bank Organizing Campaign reached the climax: “I wish we would
talk smiling each other some day in a future like:- Hey, I’ve got leukemia. I’m on medication.
- Oh, are you? Take care.
- Thanks! ““Sure, it’s our dream!’We, then, understood it was an important key for patientsto establish the Bone Marrow Bank under the control of thegovernment. But at the same time, we were aware that it would bea burden for both donors and patients.
Upon opening the negotiation with the Ministry of Heath andwelfare, we agreed on the idea that the Bone Marrow Bank
should be established with “cooperative spirit” so that it could
help people understand what the Bone Marrow Bank was for. The
goal of this campaign was sharing the dignity of “LIFE” amongrecipients, donors (as a volunteer) and all other people. That’s why
the campaign should not be combative. We often talked about it
leading the campaign.
Various people participated to this conference – survivors who
are on medication (Gleevec/Glivec), drug manufacturers, medical
providers and supporters for patients. They looked enjoying talking

Communication ﬁlled with smiles during the conference period

Akiko Hashimototo other people. There was no barrier between them. Cooperative
relationship was there. The time that different people cooperatively
work with has come and it came faster than we expected.
I remember that an oncologist told me “How I wish, I could give
people this drug traveling back in time people had to die because
no possibility for the Hematopoietic Stem Cell Transplant”. It wassoon after that Gleevec was approved for the treatment of CML
on 2001. So did I. Anybody who concern with CML thought so,
I’m sure. And the other hand, anybody knows that Gleevec wasbrought by patients who struggled with cancer in the past, data
analysis, development of computer technology and other social
factors. The past brought “Now” and “Now” creates the future.
I celebrated my birthday in the middle of this trip. “I was born ina small town in Tochigi prefecture in Japan. I’m now aged enoughto be called as an oba-san – a woman in late her middle age inJapanese. In the past, people used to think oba- san was too old totravel abroad – and now I am in Lisbon where is far from Japan”.
I had some kind of inexplicable feeling while I was looking thenight view of the Lisbon from the balcony of the hotel after the
conference and dinner. My heart was filled with a kind of deep
emotion.
I wonder that cancer treatments and medical circumstances
would be improved more than we expect some day in future.
Nobody knows what kind of faces they would show us – it may
be completely different or may be some improved framework. In
either of them, I wish they are moderate and easy to use at any
rate.

9

10

Newsletter HIROBA□

2010. May

Junko
Ohara

- the 2nd series

A Hematologist of Tomorrow“A Hematologist who manages to Understanding Medicine andthe Most Advanced Medicine at the same time. It’s my Goal.”
Takahiro Shima
Born in Fukuoka pref. in Japan, here, 28 years,
Graduated the medical department of Kyushu University,
A graduated school student of the medical department of Kyushu University after working forthe hospital of Hamanomachi and the Hematology Ward of Kyushu University Hospital.

The reason why I wanted to be a physician

Why a Hematologist?

A young boy dreaming to be a researcher gradually changed
his dream to be a physician.
I was a boy who was very curious and eager to know anythingby nature. For example, I wanted know the mechanism of its
body when I found a bug, or I loved to know the mechanismof the machine and how it worked. This curiousness drove
me to dream to be a scientists or a researcher. When I grew
up to think of my future, I thought, “If I’m studying at all, I
want to study something to help people”. Being a researcher
or a scientist was my goal, but I wondered how much I could
make sure what I did for the human world as a scientist. The
other hand, I could see and conﬁrm how much I helped people
through studying modalities and elucidating the nature of thediseases. That’s why I changed my way to go from being ascientist to a physician.

I found the way I should go in the world of hematology which
the clinical practice and study work together closely.
I wanted to go was the way as a researcher in my juniorand high school days. But I have got interested in thecommunication with patients during the clinical training after
the medical school. It’s a great encouragement to me to share
the gratiﬁcation of the successful treatment with patients. Even
though I may face painful results that I don’t expect, I think it’s a work worth doing as one of medical providers. Besides,
hematology is in the forefront of modern medicine. These
factors led me to the way as a hematologist.
Hematology is a very difficult field both clinically andacademically. Clinical practices directly connect with themost advanced medicine. For example, Gleevec that is one ofmolecular targeted agents was developed from a mechanism ofgene that causes of leukemia and it tied together with the mostadvanced medicine. Now, there are many patients who enjoy
their life by taking tablets. I think this is one of the remarkablecharacteristics of hematology, that is, the relationship between
study and clinical practices is close and the results of the study
are quickly applied for treatments.
I know the working condition for hemato-oncologists is nevergood in Japan. It would be same in any hospitals which ﬁght
with clinical practices with all their strength. I think the key
to solve this terrible working condition is enough number of
medical professionals in hospitals. Many hospitals have been
struggling with a shortage of workers and it should be same inany other medical ﬁelds.

I was absorbed in Kyudo (Japanese archery)in my college days.
I learned profundities of “spirit and skill” through Kyudo.
I wanted to join a club activity that is a kind of Japanesetraditional sports and something uncommon. It was Kyudo.
Kyudo values “Kata – basic movements” that has been built
up and been refined through a long time. It’s not just a thing
to understand at a moment’s notice. To get more reﬁned skill,
you have to face yourself, having insight into deep in yourspirit, and keep practicing constantly. Spiritual strength isimportant for any sports. Especially in any Japanese traditional
sports (Budo), You must understand the spiritual strength is themost important. The true victory must be accompanied withrefined “Kata” and spirit. We call it “Shingi Ittai – the unionof skill and spirit”. The medicine with the human touch has
been demanded these days. Although I think there is no direct
relationship between Kyudo and medicine, I’m sure practicing
Kyudo helps me a lot to push forward understanding medicine.

Communication with patients
Patients are fighting with cancer at the risk of their life. That’s why it’s important to make a bond of trust between patientsand medical providers.
I saw many patients. They are all different. It may easy tohave a smooth communication if the patient likes talking. It’

Newsletter HIROBA

may hard to construct a good relationship if the patient is very
shy to other people. There are patients who have to ﬁght with aserious disease like a leukemia of which treatment itself is lifethreatening, while there are patients who are expected to be
successfully cured. The communication with them is obviously
different in its difﬁculty. I used to worry and think how I should
face to the patient who is distressed with the life-threatening
diagnosis. Did he/she understand and accept my explanation?
I wondered I talked to them with understanding words. Or I
worried how the patient and his/her family spent the night after
such an scary diagnosis. I used to reﬂect on the discussion withpatients feeling some kind of pain. The pain was always withme whenever I had to do something difﬁcult for patients.
Most patients are older than me. I’m still young and don’t
have enough life experiences like them, nevertheless it was myimportant task as a physician to build up a good relationshipand talk closely with them. I know it’s very important to makea decision accurately by scientiﬁc data, but it’s also important
to know the patients – their personality, background and so on.
Knowing them well helped me make a decision, too. I often
visited patients in their hospital rooms and talked with themincluding a small chat. I made it a rule to say “Any question?
Do you have anything to ask me?” when I left the room.
Although it’s just an impression without any grounds among
physicians, we feel patients with more positive attitude towards
treatments could overcome more successfully than patients
who have less motivation to treatments. I know patients who
are older than ﬁfty years and overcame the hematopoietic stem
cell transplantation. They are people with high motivation
for transplantation, although they are not enough young toreceive such a sever treatment. I found those people with highmotivation had a good bond with physicians. They were never
shy to tell us anything and this attitude helped us find early
detection of complications or side-effects from treatments. It
means that helping patients have high motivation is one of thekeys to achieve a successful treatment. The best and adequate
treatments are the most important, needless to say, but I thinkraising patients’ motivation is another key. I would say, “Why
don’t you take a walk?” to a patient who does nothing but lying
on the bed. I would say, “Well, how about walking along withme?” when he/she seems reluctant to do it and walk together
in the ward. Raising patient’s motivation to treatment andsupporting by all people around the patient, this is the one thatis called as “a team treatment”. No patient ﬁghts alone with his/her disease. No medical professional treats patients one-sidedly.
Going on to a graduated school
To make full use of knowledge after a profound study.
The more I got interested in clinical practices as ahematologist, the more I wondered what my goal was. The
treatment for patients with hematologic disease has been
advanced and got complicated more and more. I wonder how
far I can trust the data collected by advanced examination
technology. No error? If not, what is the margin of error like?
These ideas worried me and I finally reached an idea that I□

2010. May

11

should not accept data from the laboratory without question.
“I examine and watch patients carefully”. It’d become just an
excuse if I don’t understand data accurately. I was afraid thatmy outlook on patients got narrow because I focused on only
things going with patients. I realized I had to cultivate theabilities to see the present state of treatment calmly. It pushed
me to go on to a graduated school.
The subject of my study is the mechanism of hematologic
disease. More effective treatment will be established whenthe mechanism of leukemia is elucidated. I’d like to make aprofound study and make full use of it. Judging with objective
and accurate view and using ability to grasp the patient’s
condition subjectively, I’d like to manage them at the sametime in clinical practices in future. It’s my everlasting theme asa hematologist.
My image of the ideal medical professional
I want to be a “cool ” physician who is admired by next
generation.
Cardiac surgeons with the hands of God have lately beenreported on TV. People would think of them cool and someof them would want to be a cardiac surgeon. As a result, we
could have enough number of cardiac surgeons. It’s same inthe case of hematologists. If I could be a hematologist who isrecognized to be cool by children, students and trainees, theymight set on their goal at being a hematologist. So I want tobe cool as a hematologist, as a human. I have actually admiredsenior hematologists who trained me when I was a trainee. All
hematologists were respected by other medical specialists in thehospital where I had a training course as they said each other,“Why don’t we ask hematologists when we have questions?”
They were not just understanding toward patients but also very
enthusiastic to study and research new treatments. They were
all enthusiastic physicians and tried to do their best for patients.
They used to research better treatments for patients until late atnight and I think it is what medical specialists should be like.
Finally, let me tell something to you. It’s a kind of a task to letpatients have higher motivation toward the treatment. But theother hand, encouraging words from patients toward physicians
as “Thanks!” or “Thank you for your effort” will be a great joy
for physicians. Keep the motivation high and overcome thedisease hand in hand!

… After the interview…
One of his favorite books is “ Silence” by Shusaku Endo.
It is the book that was criticized by Christians and Christianchurches all over the world including Japan. I think Dr, Shima
who aims at the compatibleness of understanding medical care
and advanced medicine and Endo who kept trying to look deep
inside of human spirit are standing on the same side. He is very
charming with his smile. He is cool!

12Newsletter HIROBA□

2010. MayA Personality (A Pony)

A hard Worker loves Children smiling
Ms.Obana Ogawa (An America miniature horse)【Profile】
Name

Obana Ogawa

Genderfemale 14 years old (in a middle aged as a horse)

Native place

Nagano Pref. in Japan

Staples

Clover, fresh/dried grass

Favorite foodApples, carrots and karinto (Japanese sweet cake)Job

Communication with children, Giving children a ride

Membership(NPO) Japan Leukaemia Research Fund (JLRF)

FamilyThe Ogawa (Kimiaki Ogawa who belongs to JLRF)

I’m Obana. People call me “Obana-chan”, It’s not totallydifferent from “Obaa-chan (means very old woman inJapanese). Don’t call me like that. I have a beautiful,white and long tail. It looks like the Japanese pampas
grass called “Obana” in Japanese. My name comes fromit.
I was born in a meadow in Nagano prefecture in Japan.
I was raised up very healthy with other six siblings.
I moved to Hachioji city in Tokyo with the Ogawa
when I was seven years old. The new house I live is far
different from the house I used to live. It’s small! It’s in
a community where is very crowded with houses and theroad is all paved. You know, it’s a kind of a big shock
to me when I walk on the pavement. The neighbors got
a big shock, too. A horse, even I’m much smaller than athoroughbred, is walking in their neighborhood, just likea dog with his master.
Mr. and Ms. Ogawa patiently trained me to be friendly
to neighbors and I learned how to be well-mannered toentertain people.
“ Obana is well-trained and smart girlby nature. So, my wife and I trained
her as a friendly horse to anybody
who wants to touch or to get a ride on
her back”, said Ogawa.
Anybody thinks that horses love carrots. You, too, right?
Yes, I like carrots. But the most favorite food is “karinto”,
that is a kind of Japanese traditional sweet. It’s deep-friedand coated with brown sugar. My ears never miss theword “karinto”. I can’t help eating that sweetness.

Newsletter HIROBA“ She knows and understands the word [karinto].
She may understand what we talk, too. Because sheshows the expression of “Oh, dear, I did something
wrong” on her face when I tell her off. Attitude
toward human is some like the between dogs’ andcats’. And IQ may be between cows’ and dogs’ IQ.
She is curious, too” , said Ogawa.
My job is taking kids for a ride on my back.
People call JLRF which my master belongs to.
They want to have me for their events. I am often invitedby the community promotion association around myplace or schools for handicapped children. I also often
join to a riding party at Tokyo University of Agriculture.
Autumn is a festival season in Japan and I sometimes
have to participate more than ten times in the festivals inmany places. I’m a hard worker, right?
I have my hair shampoo before the event. I use the same
shampoo with my master’s and he has my hair set for meafter it. I love being pretty. I’m a girl!
I get to the place for the event by walking when it‘s in
the neighborhood, and Mr. Ogawa takes me by driving
when it’s a little far from our place. I’ve never had
carsickness. I love driving. I feel as if I were Pegasus
while we are driving on the expressway.
I can give a ride to kids weighted under 30 kilogram.
Adults and kids who are difficult to ride for physicalreasons or are too young communicate by patting myback. Especially, handicapped children are looking
forward to my visiting. Teachers tell Mr. Ogawa that kids
have great expressions on their face which they nevershow usually and they become more active when I visit
them. Some aged people recall their old days when horses
used to be close to people.
I love basking in the sun doing nothing, but I’ll keep
my activity for people who want to spend time with me.
So, I’d like to visit more people. I don’t know if I could
communicate with kids who are ﬁghting with illness, but
I could help siblings of ill kids release from their burden
and feel happy.

□

2010. May

13

14

Newsletter HIROBA□

2010. May

A Relay Massage
No.12

It’s only one Wish “ All Patients
Achieve Victory for Well-being”.
Tatsuo Hoshizaki
The representative of the Association of Myelodysplastic Syndromes(MDS)■ My Friends who studied together to be acertified social worker
I resigned my job for a reason when I was 55 years
old. It was before I received the diagnosis withmyelodysplastic syndromes (MDS).
I used to work for a major firm which should be
impossible to get a job without good academic
background. My parents could not afford to expense of
sending me to a university, nevertheless I was lucky to
get a job in such a big ﬁrm and worked successfully until
I got 55 years old.
I took a correspondence course in social welfare
department at a university after resignation and aimed
for a certiﬁed social worker. Studying at a university was
my dream and I also wanted help young people who can’t financially afford going to a university (or even highschool) as a social worker.
I was helped by many people who studied together inmy school life. They encouraged me many times. I think
this experience led me to organize ”the Association of
Myelodysplastc Syndromes” that aims at structuring the
networking with patients with MDS, medical providers,drug manufacturer and supporting groups.
It was not easy situation to a man past middle age tostudy as much as, as fast as, and as effectively as young
people do. I had to know both will power and physicalstrength were declined. These handicaps were more severe
than I expected. Attending to classroom instructions
and a couple of works that were submitted every month
were also hard to complete. But my friends helped mewhen I got in stuck. One of them was a young mother
whose husband passed away. She has been raising threechildren up studying to be a psychiatric social worker. A
girl in her twenties, her plan was becoming a care worker.
Although she had cerebral palsy, she wanted to help otherpeople whose health condition is more serious than her
condition. A young boy, 19 years old, he dropped out
his high school as a result of his terrible conduct. But hewent back to a part-time high school and met a teacher
who led him to think about going on to study more. His

goal was a teacher for handicapped children. A nurse used
to attend classroom instruction right after a night shift in
the hospital, nevertheless she never fell into sleep during
the class. She used to say cheerfully,” My colleagues
pushed me to go and study hard”. Another one was awoman, in her 30 years, who regretted that she didn’t find her husband was suffering from depression andcould do nothing for him. Her husband committed suicide
after that. She strongly desired to be a psychiatric social
worker to help people struggling with various pains. I’m
grateful to them for their help very much.
■ The life with MDS
I attended to a forum held by “Tsubasa (a supportinggroup for patients with blood diseases) “ last fall. I
saw many patients suffering from MDS and I got thelatest information for MDS from several hematologists
fighting with blood diseases with their patients. I also
attended to the next forum and learned more about thelatest treatment for MDS, such as the number of casesof the cord blood stem cell transplantation (CBSCT)
has been rapidly increased among mainly older patients,
the fact that even patients over 55 years can be applied
for it, mini-transplantation as well. And I also learned
the considerable effectiveness of chemotherapy without
hematopoietic stem cell transplantation. I thought I coulddeliver this helpful information to patients who can’t
attend to these forums or patients whose situation is notconvenient to get information. There are many people
who have been devote themselves to support patients like
Ms. Akiko Hashimoto (she devoted herself to organize
the Bone Marrow Bank and the representative of Tsubasa
as well). I could follow them and participate to something
helpful for patients with MDS. My wish became stronger
and I started making a networking that deliver the latest
information on treatments of MDS.
Each patient has his/her own thinking way, eachsituation is different. But all Patients’ wish is “cureand getting life back as they used to be”. As for me, I’ll devote myself to an activity for patients making fullNewsletter HIROBA

use of the certiﬁcation as a social worker (as a volunteer)when I overcome my disease.
I also would like to enjoy hot spring tours, playing
baseball, tennis and skiing with my friends. Playing golf
is also my wish when I get to 60 years old. Anybody
has own dreams. Make it true. Don’t give up! Join our
network and ﬁnd an effective treatment.
Although I didn’t intend to hide this scary fact
(diagnosis), I could not tell my wife and daughters about
it for a while. I was just overwhelmed by such a scaring
and unexpected diagnosis. Even I had never heard thename “MDS”. Why me? What’s going on with me? I
looked for any information in desperation, hoping my
doctor made a mistake, through the internet and medical
books and I found it’s a serious illness and it’s a kindof life-threatening disease. I was frightened at the fact I
knew and I could not think anything.
Only a few people around me knew the name of MDS,
although it’ has been reported more often on TV or othermass media about the Bone marrow Bank and Leukemia.
I had to explain to let people understand it’s seriousness –it’s a kind of blood cancer that is a group of diseases thatcause immature blood cells (called blasts) to accumulate
in the bone marrow leading to a shortage of mature
blood cells. It can also develop into leukemia. Thereis no cure for MDS except for hematopoietic stem celltransplantation so far.
■ With a hope
One day I got grateful news from my friends. They said
they had registered themselves with the Bone Marrow
Bank. One of them was told by his wife that she wanted
him to wait the registration until their children got mature.
But he said to his wife that anybody has possibility toneed a donor for BMT (Bone Marrow Transplantation)and he didn’t register spontaneously. Another friend said
to me,” I know the system doesn’t allow me to give mystem cells to you directly, but I want to do it for you, if it’s possible”.
I read an article in the newspaper the other day. It said
that the Ministry of Health, Welfare and Labor started
out in quick approval of orphan drug (a pharmaceuticalagent that has been developed speciﬁcally to treat a rare
medical condition, the condition itself being referred toas an orphan disease) and it inﬂuenced drug manufactures
to develop new agents. I’m sure the supporting network
has been expanding. It’s encouraging, but we should not
rely on it. We should try hard by ourselves to solve theproblems hand in hand.

□2010. May

15

16

Newsletter HIROBA□

2010. May

Chronic Myeloid Leukemia (CML) / Myelodysplastic Syndromes (MDS) Joint Seminar“Coping with the Chronic Blood Diseases in Everyday Life”
Organized by the Nonproﬁt Organization Blood Disorder Information & Support Service, “Tsubasa” and the Association of
CML Patients & Families, “Izumi”
Saturday, September 5, 2009
13:30 PM to 17:00 PM
Nagoya Sakae Gas Building Conference Hall
￥1,000 for Admission
Individual consultations by the physicians/presenters are available during the Seminar.
13:30 PM to 14:00 PM
Plenary Meeting
Facilitated by Akiko Hashimoto, Chief Director of NPO Blood Disorder Information & Support Service, “Tsubasa”
Keynote Lecture “Patient and Doctor Relationships ― How to Discuss Issues and Cooperate to Get Through the Long-term
Treatment” by Dr. Akira Hiraoka, Kenporen Osaka Central Hospital
14:00 PM to 17:00 PM
Section Meetings
A. CML Meeting
Facilitated by Hideto Tamura, Representative of the Association of CML Patients & Families, “Izumi”
1) Presentation and Discussion
Option 1: “Understanding CML and Upcoming Treatments” by Dr. Kunio Kitamura, Ichinomiya Municipal Hospital
Option 2: “Coping with Childhood CML” by Dr. Hiroyuki Shimada, Keio University Hospital / Chairman of the CML
Committee, Japan Pediatric Leukemia/Lymphoma Study Group (JPLSG)
2) Panel Discussion “Being in an Age of the Novel Drugs”
Panelists: Dr. Koichi Miyamura, Japan Red Cross Nagoya Daiichi Hospital
Dr. Takaaki Takeo, Yokkaichi Municipal Hospital
Dr. Kunio Kitamura, Ichinomiya Municipal Hospital
Dr. Isamu Sugiura, Toyohashi Municipal Hospital3) Sharing Experiences and Supporting Each Other
B. MDS Meeting
Facilitated by Akiko Hashimoto, Chief Director of NPO Blood Disorder Information & Support Service, “Tsubasa”
1) Presentation and Discussion “Understanding MDS and Deciding the Best Treatment Among Your Options” by Dr. Tomoki
Naoe, Nagoya University Hospital2) Panel Discussion “Present and Upcoming Treatments for MDS”
Panelists: Dr. Tomoki Naoe, Nagoya University Hospital
Dr. Akira Hiraoka, Kenporen Osaka Central Hospital
Dr. Masahiro Kizaki, Saitama Medical University Hospital3) Overall Discussion by the participants, Dr. Hiraoka (Kenporen Osaka Central Hospital), Akiko Hashimoto (Cancer
Telephone Information Service), and Tatsuo Hoshizaki (MDS Association)

発行・編集
Nonprofit Organization Blood Disorder
Information & Support Service, Tsubasa
Chief director Akiko Hashimoto〒 154-0004
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