The Japanese Situation Related to Infertility from Patient s Point of View

1. 1 The Japanese Situation Related to Infertility from Patient�s Point of View Akiko Matsumoto (FINE) Yukari Semba (Friends of Finrrage) Good afternoon, everyone, My name is Akiko Matsumoto of FINE in Japan. First of all, thank you so much for giving me the opportunity to speak at this meeting. I am going to talk about the issues surrounding infertility in Japan today. This presentation is a joint report from me and Yukari Semba of the Friends of Finrrage. And this is my first time in my life to do a presentation in English. You might find it a little hard to understand my English, but I will do my best. You may have any questions about my presentation. But it may hard for me to understand your questions here. So I would be happy to talk to you face to face later. Good afternoon, everyone, My name is Akiko Matsumoto of FINE in Japan. First of all, thank you so much for giving me the opportunity to speak at this meeting. I am going to talk about the issues surrounding infertility in Japan today. This presentation is a joint report from me and Yukari Semba of the Friends of Finrrage. And this is my first time in my life to do a presentation in English. You might find it a little hard to understand my English, but I will do my best. You may have any questions about my presentation. But it may hard for me to understand your questions here. So I would be happy to talk to you face to face later.

2. 2 Data Regarding Infertility in Japan ? 1.The number of infertile couples is increasing. 2.The number of births through ART is increasing. total cycles number of births of ART involving ART 2000 76,073 13,158 2003 101,905 17,400 2005 125,470 19,112 (from the Data of Japan society of OB-GYN) I would like to introduce the data regarding infertility in Japan. As I show here, in Japan, the number of infertile couples is increasing. Along with this situation, the number of births through ART is also increasing in this decade. Nowadays, about 1.8% of all births in Japan are accomplished through ART. I would like to introduce the data regarding infertility in Japan. As I show here, in Japan, the number of infertile couples is increasing. Along with this situation, the number of births through ART is also increasing in this decade. Nowadays, about 1.8% of all births in Japan are accomplished through ART.

3. 3 Data Regarding Infertility in Japan ? 3.The number of maternity hospitals is decreasing. And the number of fertility clinics is increasing as maternity hospitals convert to fertility clinics. number of infertility clinics 2000 511 2003 590 2005 641 (from the Data of Japan society of OB-GYN) Recently, the number of maternity hospitals is decreasing in Japan. According to a survey by the Japan Society of OB-GYN in July, 2007, the number of obstetricians declined by 8% and the number of maternity hospitals dropped down to 914 from 1009 over the past two years. This situation has been brought about because obstetricians have to work extremely hard and so many young doctors tend to choose other specializations. For example, according to a survey by Hokkaido University in 2004, obstetricians in the Hokkaido area were on duty all night an average of 123 times a year. So maternity hospitals have a tendency to convert to fertility clinics, because doctors are overworked, and hospitals are afraid of medical malpractice suits, Cases of late childbearing and of multiple births by ART are also increasing these days in Japan. These cases involve serious risks for both the mother and infants. Therefore, the decreasing number of maternity hospitals is very serious problem in our country. In fact, some pregnant women died because it took too long to find a hospital that can accept them in a medical emergency. Recently, the number of maternity hospitals is decreasing in Japan. According to a survey by the Japan Society of OB-GYN in July, 2007, the number of obstetricians declined by 8% and the number of maternity hospitals dropped down to 914 from 1009 over the past two years. This situation has been brought about because obstetricians have to work extremely hard and so many young doctors tend to choose other specializations. For example, according to a survey by Hokkaido University in 2004, obstetricians in the Hokkaido area were on duty all night an average of 123 times a year. So maternity hospitals have a tendency to convert to fertility clinics, because doctors are overworked, and hospitals are afraid of medical malpractice suits, Cases of late childbearing and of multiple births by ART are also increasing these days in Japan. These cases involve serious risks for both the mother and infants. Therefore, the decreasing number of maternity hospitals is very serious problem in our country. In fact, some pregnant women died because it took too long to find a hospital that can accept them in a medical emergency.

4. 4 Issues Surrounding Infertility in Japan 1.Insufficient financial support 2.Failure of Japanese government to create regulations relating to infertility treatment. 3.Prejudice about infertility. 4.Poor understanding of problems and feelings of infertile people 5.Pressure by Japanese society on childless women to give birth. 6.Insufficient counseling for infertile women 7.Counseling for women who gave birth through ART is uncommon. 8.Medical system related to infertility treatment is still behind other western countries (e.g. Self-injection during ART procedure is prohibited in Japan) 9.Difficulty of adoption. We think Japanese society has come to show more of an understanding for the situation of infertile people than was the case five or ten years ago. But the following issues surrounding infertility are still found in Japan. 1. There is insufficient financial support for treatment. 2. The Japanese government has put off creating regulations related to infertility treatment. 3. Prejudice about infertility still remains. 4. Problems and feelings of infertile people are not well understood. 5. Japanese society puts pressure to have children on women who don�t give birth. 6. There is insufficient counseling for infertile women. 7. The counseling for women who gave birth through ART is very uncommon. 8. Medical system related to infertility treatment is still behind other western countries. For example, self-injection during ART procedure is prohibited in Japan. And, 9. Adoption is extremely difficult We think Japanese society has come to show more of an understanding for the situation of infertile people than was the case five or ten years ago. But the following issues surrounding infertility are still found in Japan. 1. There is insufficient financial support for treatment. 2. The Japanese government has put off creating regulations related to infertility treatment. 3. Prejudice about infertility still remains. 4. Problems and feelings of infertile people are not well understood. 5. Japanese society puts pressure to have children on women who don�t give birth. 6. There is insufficient counseling for infertile women. 7. The counseling for women who gave birth through ART is very uncommon. 8. Medical system related to infertility treatment is still behind other western countries. For example, self-injection during ART procedure is prohibited in Japan. And, 9. Adoption is extremely difficult

5. 5 Financial Support for Infertility TreatmentGovernment Subsidized Project for the Cost of ART The Project was established by the Japanese government in 2004 for the purpose of counteracting the declining birthrate. Local governments are directed to carry out the project. Only the infertile couples who qualify for the subsidy will be supported. Lack of consistency among local government I would like to show you more details about some of these issues. First, let�s look at the financial support in our country. We have �Government subsidized project for the cost of ART� as financial support for infertile couples. It was created by the Ministry of Health, Labour and Welfare in 2004, and its purpose is to counteract the declining birthrate. As I mentioned, this project was established by the Japanese national government, but it has been implemented by the local governments, including prefectures, government-designated cities and core cities. The result has been that there is a lack of consistency among local governments. For example, infertile couples who are living in some cities can be subisidized both for IUI and ART, while those in other cities can receive support only in the case of ART.I would like to show you more details about some of these issues. First, let�s look at the financial support in our country. We have �Government subsidized project for the cost of ART� as financial support for infertile couples. It was created by the Ministry of Health, Labour and Welfare in 2004, and its purpose is to counteract the declining birthrate. As I mentioned, this project was established by the Japanese national government, but it has been implemented by the local governments, including prefectures, government-designated cities and core cities. The result has been that there is a lack of consistency among local governments. For example, infertile couples who are living in some cities can be subisidized both for IUI and ART, while those in other cities can receive support only in the case of ART.

6. 6 Failure of Government to Create Regulations Related to Infertility There is no regulation or legislation in Japan. Submission of donor conception bill to the Diet is still pending, in spite of widespread needs of infertile people. From the perspective of infertile patients Legislation like the Fertility Clinic Success Rate and Certification Act in the US is needed. It might then be possible for us to decide more easily which clinic we should choose. It might bring more improvement of quality for all Japanese fertility clinics. The second issue is regulation or legislation related to infertility in Japan. In Japan, there is no regulation or legislation regarding infertility treatments. The donor conception law is needed for infertile couples and for the children who would be born through donor conception, but despite considerable discussion, no donor conception bill has yet been submitted to the Diet. From the perspective of infertile patients, we would like to see legislation like the Fertility Clinic Success Rate and Certification Act in the US enacted in Japan as well. We think it might allow us to decide more easily which clinic we should choose for our own infertility treatment. And such legislation might bring more improvement of quality for all Japanese fertility clinics. The second issue is regulation or legislation related to infertility in Japan. In Japan, there is no regulation or legislation regarding infertility treatments. The donor conception law is needed for infertile couples and for the children who would be born through donor conception, but despite considerable discussion, no donor conception bill has yet been submitted to the Diet. From the perspective of infertile patients, we would like to see legislation like the Fertility Clinic Success Rate and Certification Act in the US enacted in Japan as well. We think it might allow us to decide more easily which clinic we should choose for our own infertility treatment. And such legislation might bring more improvement of quality for all Japanese fertility clinics.

7. 7 Imbalanced growth of fertility clinics& chaotic environment surrounding treatments Fertility clinics are not under administration of government, they just register to the Japan Society of OB-GYN. The third-party�s objective evaluations are not required. Regional differences are big. Less choices if infertile people live in provincial areas. And, I would like to look at environment surrounding infertility treatments. Infertility clinics in Japan are not under administration of the government, they just register to the Japan Society of OB-GYN . Registration is voluntary and the third-party�s objective evaluations are not required. I believe this is an alarming fact. In fact, according to the survey conducted by the Japan Society of OB-GYN , the end of year 2005, there are 641 clinics or institutions which register as ART clinics, but 86% of them, only 552 clinics actually carried out ART in the year. We can presume that the remaining 14% institutions occasionally carry out ART, but not on a regular bases. The patients, however, believe to be provided high quality treatments from such clinics because they are registered as ART clinics. Regional differences about the number of clinics are getting bigger and bigger. For example, in one prefecture, there are only two registered clinics, while there are sixty-five clinics in one metropolitan area. This is a concerning fact that the more infertile people live in provincial the area, the less choices infertile people have. ????????????????? ?????????????????????????????????? ???????????????????????????????????????????? ???????????????? ???2005??????????????ART?????641??????????? ???ART?????????????552????86%???? ??????ART???????????????????????????????????? ???????????????????????????????? �????�?????????????? 1????2????????????? ?????65????????????????????? ????????????????(??)????????????????????????? �??????????????????????????????? ?????????????????????????????????? ????????????????????? And, I would like to look at environment surrounding infertility treatments. Infertility clinics in Japan are not under administration of the government, they just register to the Japan Society of OB-GYN . Registration is voluntary and the third-party�s objective evaluations are not required. I believe this is an alarming fact. In fact, according to the survey conducted by the Japan Society of OB-GYN , the end of year 2005, there are 641 clinics or institutions which register as ART clinics, but 86% of them, only 552 clinics actually carried out ART in the year. We can presume that the remaining 14% institutions occasionally carry out ART, but not on a regular bases. The patients, however, believe to be provided high quality treatments from such clinics because they are registered as ART clinics. Regional differences about the number of clinics are getting bigger and bigger. For example, in one prefecture, there are only two registered clinics, while there are sixty-five clinics in one metropolitan area. This is a concerning fact that the more infertile people live in provincial the area, the less choices infertile people have. ????????????????? ?????????????????????????????????? ???????????????????????????????????????????? ???????????????? ???2005??????????????ART?????641??????????? ???ART?????????????552????86%???? ??????ART???????????????????????????????????? ???????????????????????????????? �????�?????????????? 1????2????????????? ?????65????????????????????? ????????????????(??)????????????????????????? �??????????????????????????????? ?????????????????????????????????? ?????????????????????

8. 8 Pressure on Infertile People in Japan The declining birthrate might produce more pressure on infertile women to have children . e.g. Some elite politicians in Japan tend to insult women who don�t have children these days ? What should we do to make people in Japanese society understand about infertility? The third issue is pressure against infertile people. The declining birthrate might produce more pressure against infertile women to have children. Some politicians in Japan recently tend to insult women who don�t have children. We would like to show you some cases related to this. Japan�s Health, Labour and Welfare minister had referred to women as �birth-giving machine� in a speech to a local political meeting last year. The Minister called for women to do their best to bear children in order to counter Japan�s plummeting birth rate and rapidly aging population. Because the number of birth-giving machines and devices is fixed, all we can ask for is for them to do their best per a head.� he said. Of course, many people were against his remark, but we think it shows that he thinks that women are important mainly for their role in childbearing. And in 2003, the former Prime Minister said during a panel discussion, �the argument that tax money should be used to help take care of women who don�t even bear one child is strange.� He went on to add, � in the true sense of welfare, the state shows appreciation to women who bore many children and that it is really strange that women who enjoy a liberated life, not having any children, and later grow old should get help through taxpayer money. We think his remarks also mean that all women would be chained to a bed and made to pump out babies. They are the elite politicians of the elite of our country. We are afraid for our situation if we have to live in Japan as infertile women. So our issue is what should we do to make people in Japanese society more understand about infertility.The third issue is pressure against infertile people. The declining birthrate might produce more pressure against infertile women to have children. Some politicians in Japan recently tend to insult women who don�t have children. We would like to show you some cases related to this. Japan�s Health, Labour and Welfare minister had referred to women as �birth-giving machine� in a speech to a local political meeting last year. The Minister called for women to do their best to bear children in order to counter Japan�s plummeting birth rate and rapidly aging population. Because the number of birth-giving machines and devices is fixed, all we can ask for is for them to do their best per a head.� he said. Of course, many people were against his remark, but we think it shows that he thinks that women are important mainly for their role in childbearing. And in 2003, the former Prime Minister said during a panel discussion, �the argument that tax money should be used to help take care of women who don�t even bear one child is strange.� He went on to add, � in the true sense of welfare, the state shows appreciation to women who bore many children and that it is really strange that women who enjoy a liberated life, not having any children, and later grow old should get help through taxpayer money. We think his remarks also mean that all women would be chained to a bed and made to pump out babies. They are the elite politicians of the elite of our country. We are afraid for our situation if we have to live in Japan as infertile women. So our issue is what should we do to make people in Japanese society more understand about infertility.

9. 9 What Do Infertility Patients Need? From a survey conducted by NPO Fine (Jan/01/2004- Feb/01/2004) Through 20 websites / Valid responses: 441 ?Do you think a counseling is necessary? YES: 335(76%) NO: 101(23%) No-responders :5(1%) ?Do you have anything you cannot tell your hospital and want anyone to do it for you? YES: 374(89%) NO: 47(11%)Excluding 20 responders who are not currently receiving treatments. Next, I would like to introduce the issue regarding the counseling in Japan In order to understand what the infertility patients are suffering from most, and what difficulties they have, we, Fine, had questionnaires through 20 websites which cooperated for our research. The survey was online between January 1st (first) and February 1st 2004, and 441 respondents completed the questionnaire. The questions covered a lot of ground but we would like to show the following two most outstanding issues. About the question of �Have you ever felt you need counseling?� Seventy six percent say �Yes� Twenty three percent say �No� From this result, we know many people are suffering from the lack of counseling. Then we felt that we needed to do something for it. The next question is �Do you have anything that you cannot tell the hospital and want someone to do it for you?� Eighty-nine percent say �yes� Eleven percent say �no� These figures quite made us surprising. We keenly aware that our peers have a lot of matters to want to say, but they cannot say them. We realized that we needed to handle especially these two issues urgently. Next, I would like to introduce the issue regarding the counseling in Japan In order to understand what the infertility patients are suffering from most, and what difficulties they have, we, Fine, had questionnaires through 20 websites which cooperated for our research. The survey was online between January 1st (first) and February 1st 2004, and 441 respondents completed the questionnaire. The questions covered a lot of ground but we would like to show the following two most outstanding issues. About the question of �Have you ever felt you need counseling?� Seventy six percent say �Yes� Twenty three percent say �No� From this result, we know many people are suffering from the lack of counseling. Then we felt that we needed to do something for it. The next question is �Do you have anything that you cannot tell the hospital and want someone to do it for you?� Eighty-nine percent say �yes� Eleven percent say �no� These figures quite made us surprising. We keenly aware that our peers have a lot of matters to want to say, but they cannot say them. We realized that we needed to handle especially these two issues urgently.

10. 10 Issues Surrounding Counseling Before, During, and After treatments �Invisible barrier against counseling. �Old Japanese habitude Japanese tend to be insensitive to pains because patience is regarded as a virtue. �Most patients think counseling is helpful, but only a handful of them are actually receiving it. �Inadequate number of counselors specializing infertility �No unified definition of counseling. �Troubles resulted from differences in concepts. In Japan, regarding counseling, the first problem is that it is very hard for patients to access counseling for their hesitations. From long time ago in Japan, patience has been regarded as a virtue in our culture. So we tend to lack sensitivity to invisible pain. For this, we often do not realize the pain in our minds. From my personal experience, I believe counseling is also needed. However, in reality, only a small proportion of patients go for counseling. We think this situation is caused by a lack of psychological counselors specializing in infertility. And for another, there is no common concept of counseling in Japan. In fact, there have been some troubles resulted from the differences in its concepts. In Japan, regarding counseling, the first problem is that it is very hard for patients to access counseling for their hesitations. From long time ago in Japan, patience has been regarded as a virtue in our culture. So we tend to lack sensitivity to invisible pain. For this, we often do not realize the pain in our minds. From my personal experience, I believe counseling is also needed. However, in reality, only a small proportion of patients go for counseling. We think this situation is caused by a lack of psychological counselors specializing in infertility. And for another, there is no common concept of counseling in Japan. In fact, there have been some troubles resulted from the differences in its concepts.

11. 11 Very few counseling available for mothers Another problem related with counseling is that there no mental supports for those who successfully had family through treatments. Of course, patients suffer a lot from loneliness and have so much anxiousness while they are taking infertility treatments. But not only infertile patients, pregnant women and mothers who leave from infertility treatments still have a lot of Worries.And there is only a little mental support for them. This has been too often overlooked. I know many mothers who are distressed with child rearing and go for psychiatrist. In order not to create those distressed mothers, I believe we need a support system focusing on them. Another problem related with counseling is that there no mental supports for those who successfully had family through treatments. Of course, patients suffer a lot from loneliness and have so much anxiousness while they are taking infertility treatments. But not only infertile patients, pregnant women and mothers who leave from infertility treatments still have a lot of Worries.And there is only a little mental support for them. This has been too often overlooked. I know many mothers who are distressed with child rearing and go for psychiatrist. In order not to create those distressed mothers, I believe we need a support system focusing on them.

12. 12 Patients� concerns about clinics A patient spent too many years at one clinic without realizing the fact the clinic has limited cases of treatments ? She lost chances to get the latest treatments. There is no regulation on calculation of clinic�s performance ?Unable to compare and select clinics fairly. Inadequate informed consent ?�This wasn�t how it was supposed to be!� Difficulty in communication between medical staff and patients in Japan. ?� I could not even ask questions.� With such backgrounds, we receive complaints and worries from people experiencing infertility as the slide. -One patient spent too many years for treatments at one clinic without knowing the fact it had only a few treatment cases. Consequently she missed a chance to get the latest treatment. -There is no regulation on calculation formula on performances of each clinic, which makes it impossible for us to compare those clinics fairly enough to make the best choice. -One patient regrets starting treatments without giving sufficient informed consent. -In Japan, it is hard for the patients to have casual conversations with doctors. This leads to miscommunication between medical staff including doctors and patients, and in the worst case, they cannot even ask questions. With such backgrounds, we receive complaints and worries from people experiencing infertility as the slide. -One patient spent too many years for treatments at one clinic without knowing the fact it had only a few treatment cases. Consequently she missed a chance to get the latest treatment. -There is no regulation on calculation formula on performances of each clinic, which makes it impossible for us to compare those clinics fairly enough to make the best choice. -One patient regrets starting treatments without giving sufficient informed consent. -In Japan, it is hard for the patients to have casual conversations with doctors. This leads to miscommunication between medical staff including doctors and patients, and in the worst case, they cannot even ask questions.

13. 13 Conclusion FINRRAGE FERTILITY AWARENESS EVENTS LECTURES LEAFLET FOR PATIENTS VOICING AT GOVERNMENTAL MEETING FINE CERTIFIED PEER COUNSELLOR TRAINING COURSES DELEGATES TO CLINIC EVALUATION GROUP PETITIONING THE GOVERNMENT As I introduced you in this presentation, we have many issues related to infertility in Japan. I would like to summarize our activities to overcome the situation. The Friends of Finrrage carry out many activities such as awareness events, issued a leaflet, and are speaking at meetings of government authorities as concerned infertile person/people. Fertility Information Network has certified peer-counselor training courses, which is in the third year. We send delegates to clinic certification organization as an infertility patient group, and actively working on the government for insurance coverage and new drug approval. We have got two petitions approved. We hope to continue and expand our activities to resolve the many important issues relating to infertility for many more years. Thank you so much for your attention. As I introduced you in this presentation, we have many issues related to infertility in Japan. I would like to summarize our activities to overcome the situation. The Friends of Finrrage carry out many activities such as awareness events, issued a leaflet, and are speaking at meetings of government authorities as concerned infertile person/people. Fertility Information Network has certified peer-counselor training courses, which is in the third year. We send delegates to clinic certification organization as an infertility patient group, and actively working on the government for insurance coverage and new drug approval. We have got two petitions approved. We hope to continue and expand our activities to resolve the many important issues relating to infertility for many more years. Thank you so much for your attention.