Report from Mali – Part Five

Late Fall, 2008

They say that smell is the most primitive of the senses and transmits our memories more than any of the others. As soon as the plane from Addis Ababa landed in Bamako and we disembarked into the waiting bus, the familiar scent of burning wood surrounded us. By the time we reached the terminal a moment later, we were home…glad to be in Mali again after an unexpected 17-hour layover in Ethiopia.

We didn’t see Seyni Nafo until we left the terminal but there was no problem at all in recognizing him. He looks exactly like his father, Alfa, and, at six-foot two, stood out in the crowd of welcomers, phone card sellers, money changers and taxi drivers. We hugged warmly, finally glad to meet this unusual 28 year-old with whom we had been working at a distance for more than two years now. Seyni has acted as our coordinator/translator during all the weekly phone conferences this past year and is now in Bamako more or less permanently after getting his MBA in Montreal last summer. Over the next few weeks, Jaquelyn, Seyni and I were inseparable, he acting as our translator, driver and personal assistant. Seyni has single-handedly kept the LDN Project alive since its inception by Dr. Bihari more than five years ago, acting as his family’s agent in getting the original medical team together and keeping the Project alive even when Bihari and his associates were not able to make it happen. He is quite knowledgeable now about both the medical and cultural/social (council) aspects of the Project, and a champion of eventually getting LDN produced here in Bamako for all of Africa.

Seyni Nafo and Jack
Seyni Nafo and Jack

Within days, Seyni felt like one of our older grandchildren or perhaps our youngest son. We had many intimate conversations about his family and the Mali Culture. Having lived in Canada for so long gave him the ability to connect us to the local culture in a powerful way and made it possible for us to more easily transcend most of the cultural differences that had remained before this visit. Partly because this was our third time in Mali and partly because of Seyni, we felt an integral part of the team here. Gone were the “Mr. Jack’s” and the offer to carry my briefcase. Kisses on both cheeks, repeated twice in the local (French) custom, were offered to both Jaquelyn and me this time. Vigorous hugs from the men also abounded. We are part of the family now.

After being denied entry at 3 am into the hotel at which we had reservations because of a large Pan-African Medical Research Conference in Bamako, we found another place to stay for a few days. Unfortunately, the alternate hotel was infested with mosquitoes. We were dive-bombed every night and, within two days, Jaquelyn had 17 bites on her face alone! It turns out the Mali Government has been seeding the clouds here to increase the supply of water—but this practice has also extended the wet season and increased the population of mosquitoes…and thus, in turn, malaria. We were told by a specialist that a few months ago there were 200,000 children in and around Bamako who were infected but had no access to hospital care. We noticed a significant increase in mosquitoes this time and were glad we had (for the first time) decided to take prophylactic medication. Fortunately, we were able to transfer to the hotel of our original choice after a few days, which provided a significant improvement in the situation.

The goals of this trip were clear: 1) meeting the full enrollment of the Protocol by activating the intake of patients into the program from new sources, as well as continuing with the old ones;
2) clarifying the analysis of the CD4 data (that describes the status of participant’s immune systems and thus their ability to avoid AIDS symptoms, despite their HIV+ status); and 3) to spread the word about LDN and council further within the local “health culture.” All the meetings that have taken place these past few weeks were in support of these goals.

Doctors Carine Kunde and Issiaka Dembele
Doctors Carine Kunde and Issiaka Dembele

The major center for HIV/AIDS treatment in Bamako is called “CESAC,” and we have spent a good portion of our time during this visit bringing their doctors and social workers into the fold. The CESAC staff took the council training we offered this trip (see below) and agreed to start their own councils as part of the cultural/educational portion of the Protocol. We expect CESAC to provide at least 70 and perhaps 80 percent of the remaining 99 participants we need to complete the enrollment. The current number of participants stands at 72 or about 40 percent of the 171 needed. The group of HIV+ patients receiving only LDN is now more than two-thirds enrolled, so it is the two groups of patients who will receive the standard HAART meds and either LDN or a placebo that are still heavily under-enrolled. This is where CESAC should help us out enormously. The inclusion of CESAC in the already large team gathered here has also spread awareness of our Protocol—both the medical and council portions.

For example, during a meeting with the Minister of Health for AIDS and Nathalie Momo (who coordinates the council program along with Joseph Camara), we found Mr. Senn, with whom we had met two years earlier, much more aware and interested in our Project. The Mali Government is expanding their AIDS awareness program at the community level, organizing health workers in each of the nine regions into which Mali is divided. We talked with Senn about the possibilities of LDN being made available after our study is completed. With the cutting back on many AIDS projects that is taking place now (to give greater emphasis to other diseases) the potential of the less expensive and more easily implemented treatment that LDN provides is even more important. When we discussed council being used in Mali at the grass roots level for both education and healing, Nathalie’s enthusiasm rubbed off on Mr. Senn. If the council work should really take hold in Mali, it would be another example of how the world-wide council community is helping many people to “remember” the old ways. “Dare`” (council) started in certain traditional cultures of Africa a long time ago.

A highlight of the many meetings, most of them logistical and financial, was listening to the council leaders describe their experiences with the three groups that have been ongoing, some for as long as nine months. Here’s a part of my report after that meeting:

Joseph, Nathalie, Khalil Dicko, Seyni, Jaquelyn and I gathered in Joseph’s office at CNAM. It was the first full meeting ever about the council program and it was a gem! The office is air conditioned, which considering how hot it is here now in the middle of the day, was a goddess send. I asked about the status of the groups:

The GECP Team: Joseph, Nathalie and Khalil
The GECP Team: Joseph, Nathalie and Khalil

Council 1 (Joseph) has been going for nine months and has 5 men and 2 women. There are two couples in the group; everyone is Muslim. All seven members of the council are taking LDN only. Council 2 (Nathalie) has 6 women in it and has also been going for nine months.
Council 3 (Khalil—who, like Nathalie, is also a doctor) has been going for five months and has 4 men in it. All of these participants are in either Group 2 or 3 of the Protocol. Council 4 (Joseph). This group will begin with 2 men and 2 women and will start in December. Stories abounded:

  • After a difficult start, attendance has stabilized. It was not easy in the beginning. Now some of the groups actually meet in between times! Nathalie’s Council actually went to a concert together.
  • Learning to maintain confidentiality has been a challenge because of the stigma attached to being HIV positive.
  • A member of Nathalie’s Council started off depressed that she was HIV+ but as she opened up during the first meeting, her depression lightened and her CD4 count went up impressively for her next blood test. LDN and council seem to be quite a combination.
  • Two of Nathalie’s women are widows, one from AIDS who didn’t even know her husband was ill. This is, sadly, not untypical. However, slowly the sense of stigma is fading in the groups, month by month. In particular, there has been a break-through in telling family members, “I am HIV positive.” After a whole year of silence, one of Nathalie’s women finally told her family after the third group meeting.
  • One of the couples in Joseph’s oldest council has been a focus of a battle for months. She is a nurse and economically self-sufficient. He is out of a job and feeling a lot of shame. She is really angry that he infected her and won’t appear in the group when he does—so they alternate. The group itself has taken on the role of mediating between them, encouraging them to heal their marriage. They have both promised to appear for the next council!
  • Having children comes up a lot in the groups. It is a complex issue. As the LDN helps them to feel better they want children, not to mention that LDN is also a good fertility agent! But there is a one-in-four chance of a child being HIV+ when both parents are– unless the parents work closely with a physician and take special supplements around the time of conception. It’s an ironic twist that, if a woman becomes pregnant, she has to leave the program, so the women wanting children are torn and most are waiting until the Protocol is complete.
  • Women’s empowerment has come up in the groups, although not at first. The major factors in the continued suppression of women are economic dependency, followed by religious beliefs and practices.
  • Generally, the men are willing to use condoms and the women are getting stronger at asking their men to wear them. “But if he gets excited and out of control, I couldn’t stop him,” one woman said both with a smile and a sigh. The single men generally are looking for HIV+ women with whom to connect. This gives them more freedom in sexual contact, of course, but it is also a sense of tribe.
  • In one group there is a painter who stopped painting when he found out he was HIV+ and dropped into depression. After several group sessions, he is painting again!
  • In the men’s group, one man started off down and resistant. He lost his wife and job as a result of becoming HIV+. But after several groups he slowly came around and now he is a missionary for other men, including urging many in his community to get tested, use condoms and join a group.
  • The primary forces that have helped the groups to work are perseverance and word of mouth. The existence of the councils is getting around.
  • It became clear as we talked that a support group for facilitators is needed. This is not surprising as the stories they listen to are intense. The stigma of HIV/AIDS adds to this need in significant ways.
  • Nathalie has several young HIV+ women who want to form a group. Neither is in the Protocol. She is looking for a few others to add so she can begin one focused on youth. Nathalie’s enthusiasm is beautiful to experience.

In connection with our second goal, we have generated enough data now for preliminary analysis—and the results are promising. After six months, the majority of patients receiving LDN only are showing a stabilization in their CD4 count. Since Bihari showed that it takes this length of time for LDN to work its magic, we are hopeful the data from recently enrolled participants will re-enforce these results. We are also going to correlate our CD4 data with the nutritional status of patients through their body/mass index, since it is well known here that CD4 count is quite sensitive to nutritional status. Many of the patients are poor and cannot afford a good steady diet, so this aspect of the analysis is important. We also plan to correlate our CD4 results with hemoglobin status and eventually with the Interferon-alpha measurements that will be available at the end of the Protocol.

Although looking at the data of these LDN only patients was interesting, what really turned us all on was comparing the results of those patients taking LDN and the conventional HAART meds with those taking the HAART meds and a placebo. This is the critical “blind part” of the study. We have only a dozen patients in these two groups at present but the results are striking. In the LDN plus HAART group, and after only three months, the CD4 count of every person increased! The sample is small but if this trend continues, it would appear that the two medications have a synergistic effect that increases the potential of each in preventing HIV+ people from developing AIDS—thus confirming Bihari’s original hypothesis. The role of LDN in creating this promising (but preliminary) result is further re-enforced by looking at the group of patients receiving the HAART meds and a placebo. After three months the average CD4 count for these patients actually decreased. This suggests that LDN is playing an important role in stabilizing the CD4 count for those taking both medications. Over the next several months we will have the opportunity to confirm (or not!) these promising results as full enrollment in the Protocol is achieved.

Finally, we feel compelled to say more than a few words about what happened at our two-day council training, mostly arranged to spread the word about LDN and expand our Cultural/Educational Protocol to the CESAC Staff. Here’s my and Jaquelyn’s report completed a few days after the training, which took place on November 28, 29 at CNAM:

By the time the training was to take place we had signed up 13 people, who broke down into three groups: the doctors and social workers who were new to the Protocol and would be leading councils—five from CESAC and two from CNAM; four old timers; and several outsiders who were invited because of their interest in finding out more about LDN and council. These included a representative from the Health Minister’s Office and a leader of the Solthis NGO in Bamako that is doing a lot of educational work in Mali’s villages. The 16 of us were rounded out by Seyni, Jaquelyn and me.

The training was supposed to start Friday at 9:00 am, at which time we arrived at CNAM to find out that the regular conference room was taken over by another meeting. We found the alternative meeting place to be cozier, with a smaller rectangular table and even a controllable air-conditioner! Directly outside the conference room was a small patio where the coffee breaks and lunches were served. Adjacent to the patio were a number of large shade trees under which several families lived in small mud buildings. Just beyond that was the CNAM fence and a row of ramshackle homes made out of corrugated metal in the style of the South African townships. When we finished the training on Saturday, Jaquelyn noticed a family sitting under one of the trees watching a television set that was placed on one side of the large trunk. The mother, several small children and an older man (father or grandfather) who had helped with the lunches were all watching raptly. The television was abandoned in the excitement of having their picture taken and so had to be photographed separately!

The Family Under the Tree
The Family Under the Tree

We finally began the opening council at 10:40—after the coffee break–cell phones going off regularly with a great variety of signals. I suggested everyone turn them off, to no avail. Everyone always answered their phone, partly because many were physicians and partly because it is the custom. Seyni, our translator was no exception and periodically our translation capability disappeared on us and we had to wait. Finally, we had our first taste of non-chaos as people spoke their names, what they meant, their nick-names and how they felt about it all. There was a great deal of laughter. After a little history of council and how it all began in Africa, there were many questions for Jaquelyn about LDN, which was unfamiliar to the new members of the group. No five minute segment passed without at least one person getting up abruptly to go outside to answer their cell phone (pushing their chairs back with a scraping sound on the concrete floor that could awaken the dead). We gamely held the container as best we could. By the time we got into how to set up a council, we were in free-for-all conversation, with some people objecting to the use of a talking piece (“It will never be accepted in Mali; it’s against our religion” (which turned out not to be the case). Others said, “we already do this,” which we discovered was because of a complete confusion between counseling and counciling. By noon we had fully engaged Nathalie as a co-leader which helped—but we still had a long ways to go.

After lunch of very free-range chicken, salad and potatoes, the real agenda became fighting for council’s life against an attitude of “I don’t need anything new on my plate. We finally agreed to call council “listening circles” –Group a` Ecoute. Nathalie, Jaquelyn and I began to wear the group down with our positive stories and the experiences of the people in the groups already in progress. A key doctor from CESAC, who was sitting across the table from me and who has started out posing many questions and arguing that council would not work for their patients, began to study Jaquelyn and me more closely. I caught him giving us that “what-are-these- people-really-about look” and then “I can feel that they’re into something that is compelling to them…so maybe I should give this a little of the attention they’re asking for.” Perseverance is a warrior trait.

We ended on time and told everyone what to expect on Saturday, not having a clue who would return– if anyone! The day had been one of the most chaotic and unpromising training days I had experienced in a long time. But we arrived sharply at nine again…to find only one woman from CESAC in the room. Saturday is their day of rest and a few slept in and told us so. However, by ten everyone had arrived—to my delight and surprise. The opening check-in was attentive, with everyone using the talking piece with a light-hearted respect, just as Jaquelyn had suggested the day before. After the coffee-break we dropped into a gem of a council with the theme: “Tell a story from your childhood in which you confronted the traditions of your family and culture in a way that created conflict and shame.” The above mentioned doctor from CESAC—bless his heart—started off the council by telling a long life-story about circumcision. He had been born in a Muslim Culture in which male babies are circumcised at birth but went to school in another African country where the circumcision ceremony takes place much later in a boy’s life. The shame that plagued him for years shaped his life. His choice of topic opened a doorway into the kind of material that comes up in the councils with participants in our Program. He obviously knew exactly what he was doing and, with that story, became an ally. Others took his lead and soon we were on our way.

We talked more about setting themes with story prompts and ended the morning with the exercise of talking to new patients and inviting them into a council. After a lovely lunch of carrot salad, red rice and the traditional “capitaine’ fish, broiled perfectly, we moved into men’s and women’s circles. Even with all the food, no one got sleepy. The men went outside in the warm afternoon to have their circle. The sounds of children playing and the more pungent weekend wood-burning smells filled the air. I began by asking the men if they had experience being in men’s circles and was delighted to be told of the “grin” tradition (pronounced, “grieu”). It is an old practice in Mali for men to form small circles that can last their whole lives and that meet regularly, sometimes several times a week. The men are totally open in these circles, support each other, often talk of their wives and even start enterprises together. Malian men seem to be able to talk intimately with each other but far less so with their women. No one in the circle seemed to know where or how the grin tradition arose but it goes back a ways, obviously.

We formed an instant “grin” with the theme: “What can men do to help the cultural changes needed to stop the HIV onslaught—particularly in regard to men and women communicating more intimately and the empowering of women. Stories abounded, including trying to get mothers to overrule their husbands and bring their children, sick with AIDS, into regional hospitals. Only 40 out of some 250 are being treated in one city not far from Bamako. An NGO initiative to change the situation collapsed because the tradition that men possess/own their women is so strong the women would not rebel. The story-teller felt the needed social/cultural changes would take the urbanizations of the people and a new generation emerging. I responded that HIV won’t wait that long.

The main themes that emerged were men’s fear of women and then—for more than 45 minutes–the tradition of genital cutting of girls. These stories became a matrix for the whole need for cultural change. I spoke about the young educated Chad woman who returned home to make a film that changed her village’s genital cutting practices. Another man spoke of having to leave his “culture” because he would not let his daughters be circumcised. The whole use of the word, “circumcision” for women is questionable, as it gives it a tone of acceptance in comparison with the male counterpart. The two practices couldn’t be more different, both in terms of health and sexuality. A doctor told a few horror stories about young girls coming into the ER bleeding. I suggested finally that it is men’s fear of women’s sexuality that lies at the root of the practice—and many other similar patriarchal practices. The idea was a bit novel to the “grin” but they took it in. We all understand that it is the older women who continue the practice—and that men are going to have to play a large role in bringing it to a halt.

Meanwhile, in the women’s group with Jaquelyn, the main topic was the importance of woman’s empowerment. She heard a typical story of a family with one girl and 4 boys in which the boys went to school while the girl stayed home to do all the house work and so remained uneducated. If a boy was asked to do house work, other villagers surrounded the house and chastised the mother, saying they had heard that she was the “chief” of this house and it was not acceptable for a boy to do “woman’s work.” Clearly resigned to tradition, one older woman insisted these patterns could never change. Another older woman who was educated and able to support herself told of the price of choosing not to be married. She was called a witch, told she had demons inside of her, and was ostracized by family and fellow villagers. The women in the circle agreed that, if a man married a woman his mother did not like and was told he had to choose between his wife and mother, that 98% of the men would choose his mother. When a woman was kicked out by her husband and tried to go back home, her family would force her go back to him, telling her to be a better wife, to cook better, clean more, and be more obedient to her husband. Divorced women are seen as undesirable in Mali and traditionally cannot marry again. Many divorced women whose families have no role for her as housekeeper or caretaker turn to begging or the sex trade in order to survive and support their children. The estimate for HIV+ infectivity in prostitutes is 90%. We have been saddened to see women on the streets with their begging bowls while nursing their babies.

One younger woman said she had decided not to marry, that she did not want this situation for herself, but knew she had to be very strong, as there was no acceptance of unmarried women in Malian society. She stated emphatically that education was the only way for women to ever gain independence in a country where only 17% are literate, and very few of those are women. All agreed that, without more independence, women were not able to protect themselves from getting infected with HIV+. Jaquelyn as usual was impressed with the spirit and strength of women living in such a society, and encouraged them to start women’s groups and try to help the society move toward more equality for women.

We drove back to the hotel with Seyni exhausted but satisfied. Council was definitely alive and well– and becoming an inseparable part of the LDN Protocol. We dreamed that together they would be part of a future “New Medicine.”

4 Responses to “Report from Mali – Part Five”

  1. Dear Jack and Jaquelyn,
    I haven’t checked your web site for ages, but as Justine prepares to spend a foreign exchange year abroad in Ghana, leaving in early August, I just remembered I wanted to check into what you both have been doing in Mali. It’s is great to read this post from your trip last fall! How wonderful that the work and council circles are blossoming!
    On that note though I must honestly share that although I so appreciate knowing the intimacy of the council circles and the profoundness of what is going on, I felt that the confidentiality of those folks was violated. Maybe I missed a sentence that said you had their permission to post their sharings on the internet. I felt inappropriately included on some very personal stuff. I just needed to share that, but it is said with humility and respect for the great work you are doing.
    As I write this Justine is at the Ojai Foundation doing a day-long vision fast as she prepares for her trip. She wanted to do the one in Big Pine with Gigi, but the dates and timing were too close to her departure. So Leon got her set up with someone at TOF to guide her. I’m so glad she’s doing it. It’s pretty amazing that she got chosen for West Africa. She’s both excited and, because of what I know first hand about West Africa, a little sober to how big it will be.

    Many Blessings on that you are and all that you do,
    Love, Sharon

  2. Sharon,

    My apology for not responding to your comment many months ago. For some unknown reason I didn’t see it until recently…

    Here is a belated reply. I understand your question and, as you might imagine, my commitment to the integrity and confidentiality of council have been strong since starting this kind of work more than thirty years ago. We did not say in our review of the councils–as we should have–that all participants whose stories we touched were more than happy for us to share them as long as no names were used. The people in the groups feel they are working at the edge of their culture and are eager for others to find expression for their feelings about health, gender equality and related matters. They want to spread the word! In regard to photos, naturally we always ask permission to take them before hand. When we tell the people how the photos are to be used, they have always been positive in their responses.

    Thanks for raising this important issue!
    Love,
    Jack

  3. Hello,
    I came across your website on a search. The church that I attend, Crossroads in Northglenn, Colorado , is starting an effort to help 50 aids people in Bamako. ( I understand it to be about 20 women and their 30 children who have been ostracized from their families and villages) They are currently being helped by United Sisters for Christ (USFC)…
    Have you heard of this group?
    What is the cost per month to treat a woman? either by hart or LDN?
    I was in Mali for a month in Feb 2010, mainly in Mana…doing some work with water systems… repairing play ground equip. at a couple schools etc.
    I’d like to return for 2-3 months this Dec-Feb… to serve somewhere … with aids victims possibly… I am 55 yrs old. single man.
    thanks for any info. you could send,
    Ron

  4. Ron,

    Thank you for your comments–and for the exciting news about what your church is doing. We were not aware of the project nor has our medical team mentioned it to us. We will check with them at our next regular phone conference and see if they can make contact with the project’s leadership. Please give us some contact information.

    Yes, the stigma of HIV/AIDS in Mali and in many patriarchal countries in Africa is deep and heartbreaking…We have been dealing with it in the councils that were an integral part of the clinical program (see elsewhere in this web site). We made progress in these groups but it’s a drop in the bucket in a country in which women have so little control over their health and their lives. Your church’s project is so needed.

    Once LDN has been shown to be safe (as our program has indicated) and once the results are in and published (hopefully by the end of this summer), we are fully committed to finding a way to bring LDN into the Mali pharmaceutical mainstream. When that happens—hopefully before the end of the year at least for use with certain auto-immune illnesses such as autism and hopefully also for HIV adults—then the cost of LDN should be about $25/month. We have always held the vision of LDN being made in Mali for all of Africa, but the process of approval is lengthy and it will take some strong effort. The actual cost of the ARV drugs varies as new formulations come out. There has been some attempt to lower the cost which is usually many times that of LDN. However, the Mali Government makes the ARV medications available to all individuals who come forward for treatment. Getting people to do that is the challenging task. The Government provided the meds for our study at no cost.

    As for your trip to Bamako this coming winter, we can keep in touch and at the very least arrange a meeting of your group with our medical team. Our first priority now is to complete the statistical analysis of the data from our clinical study which was completed April first. Our team will be presenting some papers at a scientific conference in Bamako this August. Then publication in an appropriate journal becomes the priority as a prelude to LDN entering the Malian medicine cabinet. That’s the plan and we are already laying the groundwork for approval with authorities in Bamako.

    It would be an exciting prospect to have your project eventually include LDN in working with the women and children that you are serving.

    We’ll stay in touch through direct email. Thanks so much for reaching out.

    Jack and Jaquelyn