Treatment Review No. 13; August 1994
Eleanor Mitchell

When I first starting seeking medical help, I searched and searched, went through many disappointments and discrimination - yes, discrimination - even from the medical profession.

I needed someone to help me with the disease, the gyn problems, mental stress and a host of other problems that I could not get answers for dealing with just one doctor. I had my primary doctor, my infectious disease doctor, my gyn doctor, my psychiatrist, my dentist, and my therapist. No one doctor knew what the other was doing. If it wasn't for the survival kit that is built inside me, I probably would have been gone a long time ago.

I still don't have a doctor that will take care of the whole body, but I have learned to communicate with my doctors, and make them keep in touch with each other concerning my health. That was not an easy task, it took a lot of convincing and fighting on my part. I finally found a doctor that listens to me, who listens to what I have been doing and continue to do to survive as long as I have. If there is a doctor out there that treats the whole body, I certainly would like to meet him. Or her. Since I haven't found him, I have to take charge of my body and keep my doctors informed as to what medications I'm taking, making sure that they always know when another one of my doctors puts me on a new medication, especially if they're prescribing a medication that is new to me.

My therapist and psychiatrist work together to help me deal with the emotional problems that bring on opportunistic infections in my body such as herpes zoster, which is a very painful long lasting infection. My support system helps me find and get Peptide T when my peripheral neuropathy, together with my arthritis, becomes almost more than I can bear. This year, thanks to my medical doctor, psychiatrist and therapist, I have not had a herpes outbreak. It wasn't easy to get everyone to work together, but if you love self, and I do love self, then you do the leg work because it just might save your life.

Impress your doctor with your interest in yourself. You will get more out of your medical care if he knows how much you care. Health care providers, like your doctor, are people. They like to feel important and needed the same as anyone else. If they are too busy, which they often are until they see how seriously you want to know, call an organization like the AIDS Treatment Data Network and ask them to tell you about the medication, the side effects to watch out for, how it can be expected to help you and how long that might take.

Find someone that will take the time to explain things to you that you might not have understood from your doctor. The Network is my support system. I don't know where I would be if it were not for the information that I get from them. The people that work at the Network are dedicated and caring, and if they don't have the answer, they don't give up, they find an answer for you. Everyone needs that kind of information support. Someone who can point you in a direction that you haven't thought of. Find the organization in your area that can do that for you. If they don't exist, get together with other women who share your concerns and start one.

How do you do that? By finding out where the support groups are being held and getting yourself to that first meeting. Network with other people that are going through the same problems that you are. I have learned as much from networking as I have from my doctors. Learn from other women. There's no reason for you to jump over the same hurdles if someone can give you a few pointers on getting around them.

Don't sit around waiting for disaster. Take the bull by the horns. Treat it or prevent it as soon as you know about it. Remember, she who fights and runs away lives to fight another day. AIDS doesn't just go away

I think that's the most important piece of information I want to stress for women of color, for all women, for all people dealing with this disease. Take charge. It can and will feel like an uphill battle, but I'm here to tell you, the view from the top can be just fine.

What are the larger issues facing women of color? What are the obstacles and discrimination I mentioned earlier? And what is being done for women of color today to make access to health care more equal?

Anyone who's been on any form of public assistance - in my case, SSI and Medicaid - knows that discrimination goes with the territory. We can wish that weren't true, but wishing doesn't make it go away. Doctors don't want Medicaid patients because Medicaid doesn't reimburse at the level they feel entitled to. This can be so discouraging when you first start out. The encouraging fact is that there are good doctors, doctors who care and who know their stuff, who will take Medicaid patients. Many of these doctors work at some of the finest AIDS clinics and hospitals in the country. Go to those doctors, even though it means sitting in waiting rooms for too many hours. Those are the doctors with the information and the knowledge that can hopefully help you.

But don't depend on them alone. Find that support group of other women of color and learn from them. If you come up with a problem that no one's dealt with before, it's going to be a lot easier to solve by putting your heads together and working as a team than facing all those slamming doors on your own. And even though a lot of doors may slam, one of them is going to open, and that's going to be the one you want to go through.

Are women of color excluded from medical care or from newer treatments in clinical trials that might help them? Only in the ways I've spoken of already. In my experience in the clinical trials I've participated in, I have not been excluded as a woman of color. Sometimes I feel like I'm being actively recruited. Whether you want to take the drugs before they're approved or not is another question entirely. This is not a question of access, but a question of adequate information. Drugs that aren't readily available might seem more desirable - and I stress that word seem - but part of the reason clinical trials are as extensive as they are - and I'm not qualified to address issues of profit or protocol design - is to prevent the kind of harm that any new drug can do if it's not adequately understood.

Women of color must get care earlier rather than later. This is of primary importance. Women in their role as family care givers too often forget to look after themselves. PCP is still the leading cause of death in women with AIDS. Is this because women get PCP easier? No, it's because women get care later. Encourage your friends to look after themselves. That way they'll encourage you when you need it too. What's that old saying - do unto others? There are good preventive medications out there - for PCP and other opportunistic infections. But you won't know you need them if you haven't been to the doctor and had the right tests run. And if you go to the doctor and wonder if he's doing the right tests, ask around, find out. Knowledge might be power, but putting that knowledge to use is even more powerful.

And let us not forget our children. Many of us are mothers, and we have a responsibility to our children. A precious responsibility - to love them, to pay attention to them, to make sure they have the information they need in order to survive. I am a mother with three children. I know that our children are our most important resource. Our children are killing each other and themselves with AIDS and with guns. It is our responsibility as mothers, as human beings, to do everything we can to put a stop to the killing. If you need help talking to your children, call on your support system. Find the organization in your area that can provide you with the information you need, that can help you develop the necessary means of communication. If your children aren't listening, make it your business to find someone they will listen to. When children are empowered with the information they need in order to continue as individuals of value - and how will they learn that value of self, love of self, unless it comes from you, from all of us - it is only then that the killing will stop.

What's my message to women of color? Information. Knowledge. Power. It's out there. Get some. And pass it around.

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