Saturday Afternoon Session: 2:15pm-3:30pm:
WHERE THE SIDEWALK ENDS
(CART Transcripts)

Women are at greater risk of infection (she is speaking in Spanish now. But what she was saying before summarized is women have anal sex in Mexico in order to keep their virginity and they also are marrying older men for some reason I did not get) >>>: ( Spanish) many which women are unaware of the risk they run contracting

AIDS.

They assume because they are married they run risk, they are immune, a partner for life, they are perhaps a housewife so they don't belong to any of the high risk groups that would subject them to

AIDS.

However, we are finding more and more many of them are ignorant, that they ignore the sexual habits of their own husbands and there is a greater number than previously assumed of married men who are actually bisexual, for example and thus their wives do not know this are once again put at a greater risk of infection.

(Spanish).  

This is also a problem that is determined by social rules. In Mexican society men are often encouraged to have frequent sexual relationship, outside of marriage this is considered to be okay. Whereas women are expected to be faithful and stand by their men.

So we find some women subconsciously or perhaps consciously are aware of the fact or know their husband is very likely engaging in extramarital relations. But they still believe they don't risk the contracting AIDS. They are in denial, in a sense, because the recognition of what their husband is actually up to would be very painful to them.

So we see this as a problem as well.

( Spanish).

So as you can imagine there is a lot of anger or rage that tends the to accompany the moment when these women finally discover they have been infected with the AIDS virus or HIV virus or they have AIDS.  

Many times women do not learn this until their husband has died from AIDS or begin to exhibit very severe symptoms and that is when they find out.

This is in part because related to the fact that women are accustomed often in Mexican society to always be in a supporting role, to always be taking care of others, they are not the ones taking care of themselves in the secondary position.

In the Mexican foundation with the struggle against AIDS where Margarita work, for example, all the workers who are there take the AIDS test as part of their requirement for employment or just as something that everybody does.

She remembers a specific case of a woman who would accompany her husband who was coming to the foundation to receive treatment for AIDS and she and the other workers realized this woman was very likely infected with HIV.

When they asked her why don't you take the test to see if you are HIV positive   she said, "in the event we were, we don't have enough money to treat my husband and myself. And if that is the case my husband is the one that needs to be treated, he is the one that needs to be taken care of."

(Spanish).

>>>: Other related issues are the fact that women in Mexico generally are taught from an early age if they don't have a man at their side they are worthless, they need a man at their side to validate their existence.

And also they are taught not to question a man's behavior. So these are difficult habits to unlearn in a sense. Now, Margarita lists some of the main methods that are generally sut fer suggested as a way of avoiding AIDS HIV. And explains why it is problematic. Sexual abstinence is a way of avoiding it. If the married woman is the one who says no in a relationship because her husband may be HIV positive, this is unacceptable and could lead to violence   so it could be counter productive in terms of the goal.

Another method that is generally ult sufghted is reduction of sexual partners. But given it could be the married woman, she is not the one engaging in sexual partner she's really has no control in how to limit that factor in her life in terms of her risk of infection.

And the third one, as many of us know, is the condom, it is very difficult for Mexican women to demand their husband use a condom. And, in fact, this can even be reversed on them because the husband can say, "Who have you been with that you want me to be using a condom, that you think you are going to infect me with something?"

So then some people suggested the women's condom or the feminine condom as an alternative but this is a problem because it is hard to find, more expensive tan the condom for men, general lack of knowledge of existence   on how it is used. And government agencies are giving away free condoms for men but not for women but that is one aspect that many organizations are trying to promote currently, making the condom for women more available on a regular basis and educating women on it too.

(Spanish.)

>>>: So finally what Margarita recommends for the future what they have found has worked, is they need to work with both men and women. If you work with just the women on their own and try to teach them how to negotiate condom use with the men they live with, that is not very effective.

But if you bring both in and discuss it then you have a greater chance of success.

So she reiterates the need to find new strategies to address the problem with the female population and the above all not give up and to keep working in the future to address this problem in the   female population in Mexico. Thank you.

>>>: We want to also thank Ms. Tanya huning on the for providing the Spanish/English translation. And when you have questions for Margarita Tanya can translate.

We will go from one world in the south to another world in the north but you will see the connection. We would like to open it up to Ms. Barbara Grimster.

>>>: Thank you very much I always apreciate the opportunity, whether it in Canada or another part of the world for a chance to speak about systemic lupus. It is not a disease well understood by the public. Part of my job as a woman living with lupus disease, which has greatly effected how I live my entire life every day, it is great to be asked to precept this kind of information at this forum and kind of we've in my story of living with lupus, the how you can take lieu pass out of the equation and put in another disease that effect women   worldwide, whether it is physical or one not so visible.

A lot of the material I'm going to present is from this great reference, from Dr. Daniel Wallace, professor of medicine at UCLA. We don't have a book in Canada of this quality, which is very useful and it is a guide for patients and their families. We refer to it as our bible for information about lupus. It is available at international public libraries. I have the coordinates if you would like information.

I have also brought along Canadian lupus information packets which we produce in several languages. We don't do it in Spanish but French, English and man da rin. I brought along the coordinates for the lupus foundation for America and the home office is in Washington, D.C.

If you would like more information on the disease when I am finished feel free to approach me and I will give you their 1-800 numbers and you can learn more from them.  

The symptoms are puzzling and inter mit enlt and seems unrelated. Rash, sore joint, fa teetion and headaches. It can take years to diagnose often leaving the victims suffering from not only the disease but the uncertainty of whether or not they even have the disease and from the not so insignificant problem for finding the proper physician to treat them.

The disease is lupus, which simply put is what happens to the body when it becomes allergic to itself. It is quite widespread and it is highly deadly and claims the lives of thousands of patients yearly.

This quote, paragraph is from the notes from Dr. What last's lupus notes and we often use it in our lupus presentation because it is a an attention grab ber and it brings home immediately the seriousness of this disease.

In Canada we have not an accurate survey of the number of women livings with lupus but we believe it is around   50,000. It is certainly substantially more than that in the United States. "with lieu puss many patients look extremely healthy, symptoms like extreme fatigue, swollen glandzs can be easily attributed to flu, virus or exaggeration of symptoms meaning it might all be in your head. Lupus is primarily a woman's disease, 90 percent of lupus patients between 15 and 45 are women in their childbearing years.

The effect was of this disease and the disruption it can cause in family life accounts for millions of dollars yearly in loss productivity in our workforces. Internationally, I'm not just speaking of Canada in these instances. Delays in diagnosis may result in permanent organ damage. Systemic lupus erythematosus develops when the body becomes allergic to itself. It is the opposite to AIDS in that lupus causes the body to overreact to an unknown stimulus and makes too many anti bodies or proteins.

The complexity of the disease makes   diagnosis extremely difficult and creates many problems for women who are extremely ill with these symptoms. They are unable to stay in the workforce while they are awaiting diagnosis.

Diagnosis can take a long time and benefits may not be available until a firm diagnosis is made.

Personally, it took almost a complete year for physicians to diagnose that I actually did have lupus. A lot of other die seeses were entertained as possibility but it took almost a year for lupus determine to be made.

The criteria for diagnose devised several criteria for the absolute criteria for making a diagnosis for systemic lupus. Revisions were done in 1982. If first four concern the skin. The second four are associated with specific organ area involvement and the last three are abnormal laboratory testing.

But once diagnosis is made, appropriate treatment can be administered for various specific symptoms.   We were asked to consider in our discussions about our specific illnesses today what the problems could be or what the collaborations are with this disease in men, but it is primarily a women's disease.

While the development of SLE, I will refer to lupus as LSE, while the development remains unknown, genetic environmental and hormonal factors certainly appear to play a role in the development of the disease.

After the age of 50 -- that is good luck for me because I'm past there now -- approximately the age of onset of female men pause the percentage of women with lupus falls to 75 percent and the percent of men diagnosed rises to 25 percent.

So this certainly opens our eyes to the fact that sex hormones can certainly contribute to the development and clinical expression of lupus. Flares in women can certainly be influenced by their hormonal status and   one example is pregnancy can often trigger a flare of the disease.

At the times in your life as a woman you are most likely to be diagnosed with lupus is around the turn of puberty, the second is just following the birth of your first child and the third would be just around the time of men pause.

So somebody is doing research out there on those statist tick. Certainly there is some kind of hormonal study.

Several studies have tried to characterize lupus in men, to see the difference between men and women but the results are difficult to determine.

First of all, the small number of male patients, we say it is one in 10, the difference in the study methods used and the ethnic and racial differences that may influence the way systemic lupus may influence individuals. As far as disabilities issues concerned, in his book Dr. Wallace indicates that research shows that 60 to 70 percent of lupus patients can work.   Social Security, disability and Medicare, hospital and physician insurances are available to lupus patients who fulfill the criteria to be diagnosed with lupus as long as they freak went exas base of the diseases -- so someone who might have a mild form of lupus that is not organ involved or life life threatening, if they have skin rashes or photo sensitivity or sensitivity to the sun, they may not be eligible for benefits because they have been diagnosed with lupus but unfortunately they don't have major organ involve fer involvement and that precludes them from having major benefits and that is wrong. We need to work at trying to get a level playing field here for people with diagnosis for chronic illnesses.

>>>: Is that in Canada or U.S. and Canada.

>>>: It is is a international aspect.

Women in United States and internationally and Europe and other areas of the world, deal with the same   consistent problem in speaking with disability and lupus, is that it is the non-proper die know sition of the disease and the length of time that it appears to take to have a firm diagnosis, it puts them in that sort of region of do you have it/do you not.

And most insurance carriers are not likely to process a claim on an undefined diagnosis. That is the problem we fall fall between crack.

Most places in Canada do offer opportunities for vocational upgrading for individuals who can no longer do the job they used to be able to do. In Canada our criteria for disability, pension and benefits includes the phrase "severe and prolonged." that is written in just about everything you need to read to apply for any kind of substantial benefit and access to accommodation or whatever in Canada.

Often a diagnosis of lupus provides the opportunity for patients to change their careers because with lupus I can be   extremely well one day and three weeks from now I can be in renal failure and be on dialysis.

So my employment ability is often linked with my disability. And there doesn't seem to be any balance between employability and disability. There is a really fine line there that needs to be more defined.

And for me to be able to work a few days is impossible because I would lose all my benefits if I wanted to entertain the fact of working a few shifts a week or month. It is not a option. If you are disabled and your diagnosis is severe and prolonged, our Canadian laws do allow you to apply for benefits but you have to stay severely and prolongly disabled. You are not encouraged -- maybe "encouraged" is not the word. But it is difficult for you to continue to access your benefits if you are well.

So it is a Catch 2 2 for a lot of women it is not just lupus. I'm sure there are other diseases we can insert in that   sentence.

One of the major issues for lupus patients they can appear to be well when perhaps they are not. Coworkers and employers often have difficulty understanding the nature of the disease which can lead to the individual having to explain over and over again and validate why they are unable to work.

The fatigue of lupus is extremely difficult to explain to someone who is well and does not understand the complexity of the disease. While policies may be in place for accommodation of disabilities, these policies may be extremely difficult to access.

Insurance carriers do not always understand the disease and how it effects aspects of daily living and employment. If someone does have an opportunity to be aware and granted long term disability arrangement, when they return to work they often have to work up to two years to access that benefit   again. Lupus patients may not be able to work two weeks, perhaps two days.

So we have a long way to go with accessing and chailging our laws and providing better access to women with chronic disabilities.

Certainly my life in the workforce was cut extremely short with this diagnosis. I was a paramedic in the Canadian arm forces for 15 years. And the moment I became ill let alone waiting for diagnosis, I immediately lost my flight category, wasn't able to do any flights and was medically released with no option there is just no kind of place for doing my job with this kind of illness.

So since then this has been my little job, it is strictly volunteer but I am an advocate for people living with lupus and I often speak to disability groups and it is not just about lupus but overall, trying to access benefit west need with living with a chronic illness. It doesn't impact just the person with   if disease but the family, coworkers and everyone.

I appreciate your time to have the opportunity to talk to you about this.

Thank you.

You have a question?

>>>: I wanted to ask, other than how it appears to come to -- to exacerbate itself, how do you get it?

>>>: Well, we don't know what the cause is of lupus. I think in any literature, either Canadian, United States or internationally, any printed information on lupus will say the cause is unknown.

There are certain schools of thought that believe it may be genetic. I have a sister with room tide arthritis and another with clorry tis. So certainly there is a link. My mother has pre par kin son syndrome.

There are people out there doing research in this avenue. There are some people that believe there are environmental triggers that trigger the immune system.

If we have a predisposition of this over   activeness of our immune systems, I know certainly I was most ill when I was working in the operating room under floor resent lights and I was taking medication to try to be well but I was getting sicker until finally we realized, you know, maybe it is the lights. Maybe my immune system -- and certainly I was a bit better after I was out of the operating room, but certainly not cured or healed. It didn't make it go away.

But certainly environmental factors are a very big player on the screen now. I think for a lot of immune based disorder.

MODERATOR: Thank you. Now we have taken you to Mexico and Canada and now we're coming home and Patricia Smith is going to talk to you about some of the deceases she encounted in her work and obstacles the people who suffered with these diseases encountered in the U.S. system.

>>>: This is a topic I normally spend   hours talking about. The on a scales and the failure of the system is many. You're all familiar with Americans with disability act. Congress passed the act to protect people with heart disease, to protect people with cancer, to protect people who were HIV positive and to protect people with other kind of very severe disabilities.

Without exception almost every court came up with an excuse not cover one of those many kind of disease. The lower court said heart disease is not a disability, decided not being HIV positive without being full blown AIDS is not a disability and decided that cancer is not a disability.

It has taken the Supreme Court ruling to overturn the HIV positive classification of the lower Federal Courts. So we now have a ruling that says, yes, if you are HIV positive, depending upon the circumstances, you can be protected by this federal law which is supposedly to protect everybody with a disability.  

The problem is the federal judiciary. 1991 was a Republican administration and they -- and prior to that there were Republican administrations. There are -- the federal judiciary is packed with ultra conservative Republicans. And that has a huge impact on the way the civil right laws are interpreted.

In 1964 when the Civil Rights Act was passed to protect against discrimination on the basis of sex, religion, race and national origin and all the other kinds of categories we had a very liberal judery. And those laws were implemented to the full extent to what congress intended and maybe a bit more so.

We have the exact opposite situation with the Americans with disability act. It winds up being a lot of promises unfulfilled. It won't change unless we have better judges on the bench. Of course all of them have lifetime appointments so it is a huge problem nationwide.

In Virginia, we are subject to the 4th   Circuit which is the most conservative federal benchs in the nation. And D.C. you have a different circuit, the D.C. Circuit, which is not as bad. But it is very conservative nationwide.

Disability cases are the hardest cases to win in the Civil Rights arena. The absolute hardest. You have to prove that you have a disability, that you are a qualified person with a disability. And even if you had that job 20 years and suddenly you are disabled, doesn't mean necessarily that you are a qualified person with a disability.

The courts had to look at your disease with a reasonable accommodation, which your employer is required to provide, or can you do the job without a accommodation. Either way you are supposed to be protected if you can.

But if your disease is not severe and prolonged, those terms are not in our statute, but the courts have inserted them in our statute, it has to be a long   term disability, it has to be something that is not going be cured with medication. Cancer, for example, in many circumstances, many kind of cancers is looked at as something that is going to be cured with medications.

So you might be temporaryly disabled, but the ADA does not cover temporary disabilities only permanent, long term prolonged disabilities.

Persons with back injuries, for example, not considered to be with a disability in most circumstance because they are not disqualified necessarily from all jobs.

Maybe they are a laborer or a waitress or something like that where they are on their feet all the time and the back injury prevents them from doing that kind of job. But they can go off and do a difficult kind of job. So the court say they are not disabled.

For those people who do have jobs, and come up with a disability or a severe condition we do have the fam federal   Family Medical Leave Act which is somewhat helpful. It provides an individual that works for an employer with more than 50 employees and has been there for more than 12 months you can have up to 12 weeks absence in any 12-month period of time in order to take care of yourself for medical reasons or to take care of a family member with a severe medical condition.

The Americans with disabilities act does have another provision that also protects medical information. It is an entirely separate provision, you do not have to move you are a qualified person with a disability in this instance. You can be an individual who is basically healthy but has some kind of surgery, for example, that they need to have. They don't want the workplace knowing about it.

If you inform your employer that you have to be off for that reason, that information that ha to be protected in very special ways. It cannot be   disseminated throughout your place of employment. If the employer does not protect that information under specified ways in the act, they are subject separately to a lawsuit under the ADA.

In the insurance arena there are some bright aspects on the whore lie son. The health insurance accountability and portability act was passed during the Clinton administration. What that provides is that persons can take their health insurance with them when you go from employer to employer. So if you want to change jobs, you are no longer locked into the job you want to get out of solely because of insurance reasons.

It used to be if you changed jobs you would be subject to precondition clause, which excluded all prepreexisting conditions for at least 12 months. In some instances the employer would write a policy that would exclude your specific problem forever. By federal   law now that is prohibited. This applies to every employer. Doesn't matter if you have one or 1,000 employees, it applies to everyone, local and private and federal government.

If your new employer policy has a preexisting condition clause, you get credit toward satisfaction of that clause for the intime you have been on any prior insurance. And that is the case as long as you don't have more than a 63-day break in coverage.

For example, if you leave your prior employer and don't go to a new employer for three months you have to make certain you maintain your coverage in that interim period of time in order to keep from being subject to preexisting condition clause. You can keep that coverage by another program passed by the federal government several years ago called COBRA, and that allows the individual who is leaving the employment to keep the same employer's health insurance policy by paying the entire   premium themselves. But they get the exact same coverage. So we have these two sort of bright stars on the horizon in terms of at least some insurance and that is in terms of federal law. Of course the other side of that coin is that insurance companies don't want to pay a cent for anything for anybody no matter what and will try to get out of paying, you know, for anything.

I sue a lot of insurance companies as well so this is very familiar area. But and this is true both in health insurance, disability insurance and life insurance.

Barbara mentioned there are problems in Canada getting coverage for an undefined diagnosis. There is not a single insurance policy, disability policy or health insurance policy that I as a lawyer have ever seen in my entire practice that says that they will not pay for an undefined illness. They will pay in event of disability if it   disability practice. You just have to prove the disability not a particular diagnosis. It is whatever is written in the policy that applies.

You have a lot of insurance cases where the insurers are trying to have objective medical evidence to prove chronic fatigue or fibromyalgia in an area where there are not scientific tests to prove a particular diagnosis. But insurance people... not required by the term of the policy under which they are covered. If you go to a lawyer, if you ultimately have to sue, more than likely that determination will get overturned. But the problem is that the insurance companies keep doing it any way because the likelihood is that the people are too sick to get a lawyer. They don't have the resources to get a lawyer or to go to court. And if they deny everybody there is only a small percentage of those people that will come back either through administrative appeal with the   insurance company or through the court system to get it overturned. So regardless of getting over turned eventually by a court system they spend less money in lawyers than they would simply pay all the claims they actually should pay under the terms of the policy.

So if you ever get in that situation, get a lawyer, find somebody. There are not a lot of lawyers that practice in this kind of area, but I have had untold number of cases where the insurance company simply buckles. They roll over and play dead almost as soon as a lawyer steps into the picture. I have had cases where the second I file a lawsuit the next thing in the mail I am getting a check for back benefits.

Not all cases are that easy, I wish they were. But chances are if you fight it, there may be a way to win it, don't just think that it is the insurance company and they always win because they don't. Some of you may have been following the   date line and 60 minutes programs about the UNUM life insurance company and all the many thousands of disability claims they just denied just for no reason, like what I'm talking about. That is rampant in the insurance industry. They are trying to use the Federal Courts as a rubber stamp for everything they do.

And the only way that will ever change is through congressional action, difficult kind of insurance programs particularly for the health insurance industry, and having the Federal Courts stand up to this entire industry, which is not an easy thing to do when most of your federal judiciary is filled again with judicial conservative.

So good news and bad new, but you have to be politically aware, have you to be constantly vigilant as an advocate.

>>>: Now, we have gone through each of the countries and you can start to get a feel about the basic human problems that people with these disabilities are suffering and whether they suffer as a   subgroup or a main group like HIV or a disease that effects primarily women.

And you have seen kind of some of the problems that are arising, widespread discrimination agains women, people not being able to make a living when they contract the dediseases and systems that break down when these people really need them.

I will look forward to hearing what you guys have to say and what your response is to this story.

But before we do that a lot of this has to do with work. And in North America, just like everywhere in the world, people are moving and not staying home. Causes away from home are causing them to leave their home to go to work. Margarita Concepcion is going to talk about populations that are not visible.

People in Canada have a problem gets services in Canada or people in United States have problems getting services in the just, what about the foreign population in America, what problems do   they face and Ms. Conceptyon is going to talk to us about this issue.

>>>: I'm happy to be here and I'm going to be here. Probably some of you saw me yawning. It is not boring. It is very appealing what I'm hearing. My John takes me all over from the United States. And I just got back home from Ohio from San Diego 1:00 in the morning. So I had to take my plane at 6:30 in the morning so I had to be out of my house at 5:00 in the morning. So I only slept two or three hours and got on the plane. So I was taking cat naps here and there and here and there.

But I'm happy to be here because as an advocate you don't want to miss any opportunity that is given to you to speak out for what you believe, for what you want the world to know want what needs to be done.

Me being a for mir migrant worker, we used to work all over the United States in the migrant flow. And now I have two programs that I work with:   One is the breast cancer, which is funded flew Susan Coleman foundation. By the way I work with real tunes in Ohio.

Real Opportunity has seven offices in seven states throughout the United States. And our target is to serve the my grant population and theory Rawl poor, the under received and under insured.

When we work with the migrant population with the women doing the prevention education with the breast cancer and trying to get the women to go and get their mammograms, those that are over 40 years old, and I was sharing with some of the ladies that it is hard because, for one thing, they panic, how much is it going cost. And they don't have the money. They are not insured so they are very rarely do you see them on welfare lines getting welfare.

Because for one thing they don't want to miss a day's work because they need to go and put the food on the table. Their wages are very, very low. No insurance   whatsoever, no holiday pay, no over time and and a half, nothing like that.

Once Labor Day comes, it is no Labor Day for them to be doing a picnic or taking a break from the work. It is just another regular day to work.

The working hours is just ridiculous. It is like from 4:00 in the morning and they will be coming home around 9:00 p.m. and they are still working, doing their dinner and prepares everything for the next morning.

It is a very overworked population and very invisible because nobody seems to know what are they, what are they doing here and it is very hard.

For them to go to a place to get served, they face a lot of barriers. For one thing is the language barrier.

Agencies, hospitals, community agencies really don't have access to provide translating so they are turned back and they will not be served because they have no one to translate for them. And this is where Real Opportunities go and   provides education in their own language and fitted to their culture and if they need a trans later and someone to take them to get the mammograms this is what we do.

We are limited on the funding because Susan Coleman does not fund us to serve as many women as we would like to see because in the United States there is 14. 7 million migrant farm workers. And out of those 14.7 million 19 percent, the ages of 15 through 24 have been found to have HIV positive.

And that is the other population that I work with and it is very hard to make some kind of connection because there is a lot of MSM or men having sex with men.

And when I say that that is not just your regular age 30 to 40 years old. It is the young men who come over to the United States to make a living, to send their money back to their families and it is as from as young as 13 years old and they are in camps where there is crowded conditions and you will will   find 10, 12 men living in one cabin.

So sometimes that young person is practically seeing himself as being a sex worker inside the community. Yet it has to be a hush hush, very invisible. Because in the Latino community the MACHISMO is very big. And for them to see the flow going on is not something that that will be tolerated and it is something call that is kept very quiet and that is why we call it the invisible population.

It is very struggling to see how they suffer because we want to do as much as we can, but there is just very, very limited access.

The other thing that we see a lot is the transportation. If a woman wants to go into a clinic and get herself some help, sometime there is no transportation to go because there is only one vehicle in the camp and that vehicle is being used in the fields to work.

And most of your appointments are going to be from 9:00 to 5:00 and that is when   everybody is working. So it is very difficult for the women to go and find help.

As far as condoms, practically it is just impossible to go and distribute the condoms because HIV prevention in the migrant community, in the rural community is not really being funded by anybody.

Health departments are being funded, but health departments have their own criteria. So it is very hard to go and do the outreach to this population. As to getting the services, I a lot of the people do not understand the culture and instead of being helpful, they are not making it my grant friendly so the migrant people know about it so they are not going to know. For instance, there is a lot of tradition

in the my grant culture, in the Hispanic culture, for that matter the Latino culture, a lot of people in our tradition believe if the child is sick it is more than likely the child has an   evil eye.

Somebody looked that child and somehow aattracted fever and got sick and they believe this.

So when they go to the doctor and let them know and, "Well, I think they have the evil eye." when we translate that to the doctor the doctor instead of honoring and being careful about that culture sensitivity, they laugh at their faces and that is very humiliating to them. So what they do is they will turn back and never come back to seek services. Another thing is when they are sick and go in to a lot of illnesses they don't have time to go to the doctor. Only when it is intolerable that they go then to seek help and at that time it is almost more than likely too late. A lot of our HIV cases we have been seeing is not HIV positive but full blown AIDS.

A lot of you who know about HIV it has already gone through the process,   already in the late statements so they have already been effected for years. So can you imagine how many contact they had and how many are infected.

So it is something I stress to as many places I can go and say, "We need to do a better job with the migrant population because this is the work they are doing that nobody wants to do. One thing it is very hard work, another thing it is very much underpaid with no benefits whatsoever, not even insurance."

A lot of them are undocumented but they do pay Social Security and they never get to see a cent of it, never. And I just learned that Social Security department has like 14 billion dollars and they are all stashed away and they don't know what to do with that money. More than likely it is the money that the illegals have paid, so they are paying their part as any American would be. But they don't have access to that money.

So now we have the representatives we   have got congress, we have people wanting to have a hold of that money.

>>>: It is in Iraq.

>>>: That could be.

So I would urge you that when you talk to your representatives, to your senator, we are going to voting again for the program, the 167, which is a program that makes us more hopeful to serve better the migrant community.

There are a lot of people that are legal here. There are a lot. But a lot of them are coming from Mexico and the Hispanic population, the majority of the migrants are Hispanics.

And there are a lot, a lot of infirmities going on.

You have diabetes and by the time they get to be checked it is already far advanced. High blood pressure, eye diseases and there is a lot of them that need the surgeries for glaucoma, need surgery of different situations. And yet, there is no doctors to do that job because they only have the my grant clin   nibs and only give you tie nol for pain on the back because you have been working so hard, or they give you the pills to keep control owrn diabetes, but that is about it.

If they need surgery, they are out of luck. They don't have none whatsoever.

Thank you.

>>>: I want to thank you guys for being very patient. And I would like you to give a hand to all these wonderful women who fight so hard for people's right.

Before I turn the table over the you guys I want to share what you have taken from this that I think we have brought to you and to share what I have lerpd from this conference. This is my first con conference with this organization. Margarita Concepcion talked about my grant workers who don't have access to all these benefits.

For the Mexican population that are here, that is millions of people who pay into the U.S. system that get nothing and because they are here they don't pay   into the Mexican system where they can have access to benefits so when they become disabled they have access to nothing where they are working just like everyone else in the countries.

There is a lot of connection.

This morning we attended a conference on coalition building. And they were talking about building coalition in a community, in a state or in a country. But you know we have to start thinking about building coalitions across borders because there are all kind of connections.

There is a connection between disability, between migration, and between women issues and everybody is fighting for the same thing. And another thing I heard today at lunch one of the young women says, "I hope when you leave the conference tomorrow you're angry." and I think a lot of these things should make us angry and should make us think, how are we going to make it better.

I work in an international organization,   and if you want to see tough, you worked with your local community, imagine dealing with three countries. But we have to start thinking about this. So that is what we have brought to you and what you have given us. I would like to hear what all you activists have to say and your ideas in what you are going to take home from this panel.

Thank you very much.

I guess I will take you and then I will take you.

>>>: The comment I have is that I was recrementsly diagnosed with MS. And doing the research that I have had to about the disease it clicked one day there is a grouping of auto immune deceases that primarily effect women yet they know virtually nothing about them.

I would just like to say that while we are in this forum in our lobbying for the issues that we are concerned about is to also press for more clinical research to find out what the connection is between those things. I think there   is a large connection between the reaction of women's bodies to silicone and implants which is a very current issue.

Without knowing what those connections are, it is very easy for everyone else to kind of push them to the side and put them under the rug and not have to deal with them and put them in women's heads and all those negative attributes that we get.

>>>: I would like to say something about our research.

I can speak a little bit about the medical research aspect of that is in Canada, lupus Canada funds sound pled call research. We are not very -- we will not fund research not related to lupus. We are funding research now in large pockets of money that seemingly may not have a lot to do with finding a cure to lupus. It is part of the genome project, hormonal, we are funding the kind of research projects now that 10   years ago we would say, "Oh, well, what does that have to do with lupus."

So as a nonprofit health based chairty we are becoming smarter and your example is is exact, right on. We have top fund good research for everyone. Hopefully the individuals doing the good research will find something that connects to all of us, whether it is diabetes, MS or whatever, we all as national health chairties need to address the issues when we are talking about research funding is that we can't be that narrow minded that you have to prove to us this will work for our objective.

I will take the woman in the purple and the woman here and then we have been asked we have to leave.

>>>: I came back from the immigrant workers freedom ride and one of the things I carried away from that is no group can do it alone. What you said about your lupus group in Canada funding other things is vitally necessary.  

It is not going do any good get an avenue in citizenship for 14 million illegal migrant workers if when they get into citizenship they are still oppressing women so those of us who care about the fate of women and fate of women with disabilities need to cooperate with those other efforts and see to it that by example we are showing them what we value and how they can grow in those values as well as in the values of their particular issues.

>>>: Thank you.

>>>: A comment, sort of question, one of the issues that I see with long term disability, people are disabled because of whatever, is that and this you are eligible for Medicare A and B, and a certain amount of money every month. But that doesn't keep pace with cost of inflation.

If you are disabled as a young person in the height of -- oftentimes it is at the height your career, but you have decades yet and you are expected to live on that   and the Medicare situation is that it does not pay for things like -- this situation I just had with one of my patients.

In the hospital, need on four wees IV anti buy yolt tibs. Well, they wanted to put him in the nursing home, young man, spinal cord injury went in with a (inaudible) wound. He needed four weeks of antibiotics but Medicaid won't pay for home care infusion. They will pay for it if he goes a nurse ing home which then they lose all their community supports, all they attend dapt care. People just can't wait around for him to come home to start working. They have got bills to pay too.

Then you have somebody as young that is institutionalized because they wouldn't pay for IV antibiotics at home for four weeks. You have destroyed a life and taken them out of community.

This is a large discrimination, pro institutionalsation of people with chronic disabilities that I have come   across.

And then also with long term disabilities with attendant care we have Olmstead but there are a lot of things that need be worked out about it, you can get attendant care if you go into the nursing home but you get very, if any, support to pay for attendant care at home. So you can stay in your home in the community. But everything is geared to going into the nursing home. I see this as a real, serious factor in the isolation and ghettosation of people with disabilities, particularly when they become disaimed young.

>>>: I will address that very briefly. You are absolutely right. There is almost noag about the Social Security Medicare regulations and procedures that make sense.

And that is not going to change without major regulatory changes. Chances of that happening in the administration are slim to none. So.   >>>: Thank you mod thank you very, very much. Two things first. We want to thank all the trains laters for making it possible to communicate with each other.

Second, if any of you are in Washington on morning and you have the morning free -- our panelist are having a round table in our office at 1211 Connecticut Avenue. We have breakfast and going into more depth and more of a conversation style so we can tease out this issue. If you are free and in town, drop by. Thank you very much.

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