Former Anti-C Drug Doesn't Pay Enough To Treat Sleep-Sickness of Poor

More proof that reality is ***, as if anybody is shocked, shocked.

http://select.nytimes.com/2006/03/29/opinion/29talkingpoints.html?pagewanted=all



If you get sick, it's better to have a disease that afflicts the rich.
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By TINA ROSENBERG
Published: March 29, 2006

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Tina Rosenberg, an Editorial Board member, writes about human rights
and foreign policy.

In This Talking Points
I. How a Beauty Regime Salvaged a Cure for Sleeping Sickness
II. Why the Youngest AIDS Victims Suffer Most
III. Why One Million Africans a Year Die of Malaria
IV. Tuberculosis, Another Overlooked Killer

Previous Talking Points Articles



Related
Tina Rosenberg's New York Times Magazine article on the use of DDT in
Africa.
New York Times editorial about the push for new pediatric AIDS drugs,
with emphasis on the Clinton Foundation's involvement.
Elizabeth Glaser Pediatric AIDS Foundation Web site, which includes
reports on their efforts to combat pediatric AIDS in Africa.
New York Times editorial on President Bush's program to fight malaria
in Africa.
Centers for Disease Control and Prevention Web site, a database with
information on many of the diseases profiled here.
Morbidity and Mortality Weekly Report, a newsletter from the Centers
for Disease Control that contains articles and statistics on many of
the diseases mentioned in this piece.
The Africa Malaria Report 2003, a comprehensive analysis of the malaria
epidemic there.
The Malaria Site, a resource for information on the disease begun by an
Indian physician in memory of his mother, a malaria victim.
Report from Drugs for Neglected Diseases Initiative conference (pdf) in
Geneva, Switzerland, in 2005.
The Gates Foundation page on the TB Alliance.
It's hard to imagine how a Rwandan woman with AIDS might be considered
lucky, but in a way, she is. Effective drugs exist to treat her
disease, and their price has dropped by more than 98 percent in the
last six years. Research speeds ahead on treatments and vaccines.
Although much more needs to be done, the world takes AIDS seriously:
rich countries provide money, drug companies have lowered their prices
and accepted generic competition, and poor countries like Rwanda are
scrambling to provide free treatment to all who need it. None of this
is true for people who suffer from malaria, tuberculosis, or a host of
other diseases that citizens of rich countries haven't even heard of
- like kala azar, sleeping sickness and Chagas disease. Even children
with AIDS are out of luck compared to their parents.

All these diseases have been abandoned in some important way. For some,
no good treatments exist and there is little attempt to invent them.
For others, effective drugs exist, but aren't being made. Or those
drugs are so expensive that poor people and poor countries have no hope
of buying them. Most of these diseases are easily preventable and
completely curable. Saving the lives of their sufferers is much cheaper
and easier than treating AIDS. Yet millions of people die of them. Why
the difference?

As fatal illnesses go, AIDS is the best one for a poor person to catch
because rich people get it, too. The other diseases might as well hang
out a sign: "Poor People Only." They offer researchers no profitable
market. They have little political constituency. There is no
well-connected group of sufferers who stage protests and lobby
pharmaceutical companies and Congress to develop better medicines or
make existing ones more available. The response to disease is
political: the illnesses of invisible people usually stay invisible.

Five years ago, that would have been the end of the story. Today,
however, for the best known of these diseases - malaria and
tuberculosis - the bleak outlook is starting to change. They are
slowly beginning to get the attention, money and research merited by
the world's top killers.

People with AIDS all over the world are fortunate to have fellow
sufferers in America and Europe. They are even more fortunate that many
are middle-class gay men. These men have lots of education, leisure
time and income (and usually no kids to spend it on). They are
predominantly urban, well-connected and ultra-sophisticated. Their
buying power provided pharmaceutical companies with a lucrative market
for AIDS drugs. And they lobby. Groups such as ACT UP, which began in
the 1980's fighting for the rights of their own members, are now savvy
advocates for that woman in rural Rwanda. In poor countries as well, it
helps that AIDS strikes all social classes. Brazil would never have
become the first poor country to guarantee free AIDS treatment to all
who need it without the activism of its many homosexual organizations.
For every AIDS victim, though, there are many more suffering from
diseases that lack this kind of constituency. Today, contracting a
serious disease that affects only poor people is the worst luck of all.



I. How a Beauty Regime Salvaged a Cure for Sleeping Sickness

The story of sleeping sickness is a scandalous illustration of the
politics of neglected diseases - and of how much wealthy people drive
the global medical market. After malaria, sleeping sickness is the most
deadly parasitic disease. It is endemic in 36 African countries and is
always fatal if it is not treated. The cure used in most places is
melarsoprol - an arsenic-based drug so toxic that it collapses each
vein into which it is injected and kills between two and eight percent
of those who take it. There is another cure, eflornithine, so effective
that it is called the "resurrection drug" - it makes people in comas
get up and walk.

Eflornithine is an old anticancer drug that turned out to be not very
effective against cancer. In the mid-1990's, the company that made the
drug stopped making it. The fact that it was extraordinarily effective
at treating sleeping sickness didn't matter, because victims of that
disease had little money to pay for it. After it stopped production,
the company, which is now known as Sanofi-Aventis, licensed the drug to
the World Health Organization, which together with the medical charity
Doctors Without Borders, searched for another manufacturer. But by
2000, the existing stocks of eflornithine were dwindling and no other
manufacturer was interested.It looked as though the miracle cure would
disappear. Then lightening struck. Eflornithine reappeared in a
six-page ad in Cosmopolitan magazine as the active ingredient in the
Bristol- Myers Squibb product, Vaniqa, a new cream that impedes the
growth of women's facial hair. Doctors Without Borders, which had just
won the Nobel Peace Prize and was launching an initiative to find cures
for neglected diseases, seized the opportunity to launch a publicity
campaign. Christiane Amanpour went to southern Sudan to report on
eflornithine for "60 Minutes."

The predecessor to Sanofi-Aventis, which still controlled the rights to
the drug, eventually agreed to donate a five-year supply, plus money
for research, surveillance and training of health care workers, in a
package totaling $25 million. The donation runs out this year, but
there is a good chance it will be renewed. A Bristol-Myers Squibb
spokesman inadvertently summed up the plight of sleeping sickness in
2001: "Before Vaniqa came on the scene, there was no reason to make
eflornithine at all. Now there's a reason." The market agrees with him.
Saving American complexions is a reason. Saving African lives,
apparently, is not.


II. Why the Youngest AIDS Victims Suffer Most

AIDS in adults is a global focus of concern. AIDS in children, however,
has been ignored.

Last year, 570,000 children died of the disease in poor countries, and
700,000 children became infected with H.I.V. Children should not be
getting H.I.V. in the first place. Most of them acquire the virus in
the womb, at birth or through breastfeeding. Infection is easily
preventable with a drug that costs about a dollar per treatment. In
many countries, the drug's producer, Boehringer-Ingelheim, provides it
for free. It should be used everywhere in the world. But it is not.
When children do become infected with H.I.V., there should be a good
antiretroviral treatment for them, as there is with adults. But there
isn't. Only about 40,000 children worldwide receive lifesaving
antiretroviral drugs to combat AIDS. Children's antiretrovirals are
expensive. Even in generic form, they cost three or four times the
price of adult drugs. The syrups for young children taste terrible. The
cheapest option for older children is to take the generic adult pills,
broken by a caregiver into halves or thirds. But this poses a risk of
underdosing or overdosing, as a half a pill doesn't necessary contain
half its active ingredient.

Since most children with AIDS got the disease from their mothers, most
sick kids are being raised by a grandmother or raising themselves. This
makes having child-friendly medications even more crucial. One of the
most important reasons the AIDS treatment revolution has bypassed kids
is that pediatric AIDS is now almost exclusively a third-world disease.
Virtually all pregnant women in Europe and North America get AIDS
tests. Those who are H.I.V.-positive are either given antiretroviral
therapy or a drug to cut mother-to-child transmission of the virus. In
1990, 321 infants were born with H.I.V. in New York City. In 2003, only
five were. This is wonderful news for wealthy countries. But it has a
deadly side effect: it means there is no more paying market for
pediatric AIDS medicines, and no lobbying by those whose children have
gotten sick. One result is a dearth of affordable child-friendly drugs.
Former President Bill Clinton's foundation has negotiated cheaper
prices for generic pediatric AIDS medicines from Cipla, an Indian
manufacturer, but this only covers a few drugs.

The disappearance of pediatric AIDS from rich countries harms African
children in more subtle ways as well. AIDS doctors and nurses in poor
nations need clinical training in how to treat small patients whose
doses must change as they grow. But there are few doctors with
experience treating pediatric AIDS - they come from places that
either don't have the problem, or that don't have the solution. Not
much research exists about the long-term effects of antiretroviral
drugs on kids. There has been little push to improve diagnostic tests
or bring down their price - a serious problem, because the most
widely used tests do not work in children under 18 months old.


III. Why One Million Africans a Year Die of Malaria

Malaria used to be common as far north as Canada and Britain. It killed
Oliver Cromwell. Shakespeare refers to it, as "ague," in eight of his
plays. But today, many Americans don't even realize it is still around.
Malaria is all but invisible despite the fact that it is one of the
world's top killers, with over a million victims a year in Africa
alone. It is the leading cause of death for children under five in
Africa. Because rural children don't lobby, malaria is ignored even in
Africa. Governments have come to accept a million child deaths as the
natural order of things.

Malaria's victims suffer from their invisibility. One way is through
lack of money to fight the disease. International organizations and aid
agencies talk a lot about malaria. But they have not backed their talk
with money. The solutions they push have been things poor people can
buy for themselves, because most donors are unwilling to finance more
effective measures. All over Africa, a main cure for malaria is
chloroquine. The great advantage of chloroquine is that it costs only a
few pennies, so even poor African families can buy it. It just has one
small problem - in most places it doesn't work. The parasite has
become resistant to it. There is a new, effective cure, called
artemisinin-based combination therapy. Countries should be switching to
it rapidly, but they are not, because it's much more expensive -
around $1.40 for an adult cure, 40 cents for a child. That doesn't seem
like much to save a life, but it's more than most malaria-stricken
families can afford. That means rich-country donors would have to pay.
Until recently, they haven't.

Now the United Nations' Global Fund to Fight AIDS, Tuberculosis and
Malaria is starting to help countries switch to a malaria cure that
actually works. Wealthy nations are also eager to help prevent the
spread of malaria - as long as it doesn't cost much. The hot
prevention tool today is an insecticide-treated net to hang over a bed.
These bed nets are very effective, if people can get them. But people
can't, because donors don't want to give them away. Even at the
subsidized price of three dollars, the cost is high enough so that
people living on a dollar a day do not buy them. One survey asked rural
Africans what they would buy if they had the money. A bed net was sixth
on the list. The first three items were a radio, a bicycle and,
heartbreakingly, a plastic bucket.

Bed net sale programs generally do not work. In contrast, the country
of Togo in 2004 gave away bed nets during its national measles
vaccination days. Everyone who brought a child to be inoculated got a
free bed net, or a voucher for one. Virtually overnight, Togo acquired
an effective form of malaria prevention for most of its young children.
But this is a solution many donors seem unwilling to finance.

The United States, of course, didn't beat malaria with bed nets. It
killed mosquitoes with insecticide - something that African nations
also did with much success half a century ago. Today, South Africa and
Mozambique have drastically reduced malaria cases with a program to
spray the insides of houses with small amounts of insecticide once or
twice a year. Why don't other nations do this? Because it requires
government financing, and that means rich countries have to pay. So
far, they remain reluctant.

The truth is that many malaria victims would be better off if America
still had the disease. If malaria still existed in America, we would be
attacking it with DDT . In fact, we did exactly that. America sprayed
DDT in large quantities on crops and cities. This was extremely
irresponsible and did terrible environmental harm. But now we know that
DDT can beat malaria without environmental damage, if it is used as it
is in South Africa, sprayed in tiny amounts inside houses. DDT,
however, is banned in the United States and Europe. That means that
Washington has not, until the last few months, financed its use
anywhere else and it has blocked the World Health Organization from
issuing recommendations to use DDT. American officials maintained it
was hypocritical to push an insecticide overseas that is banned at
home. Americans are beginning to realize, however, that it is more
hypocritical to deny Africa the ability to use responsibly the tools we
used irresponsibly to beat malaria. Last year, President Bush announced
a new program to fight malaria in Africa that he says will provide an
additional $1.2 billion over the next five years. Such promises have a
way of drying up, especially when they concern programs with little
political constituency. But the program is well-conceived. It will give
away bed nets, buy malaria drugs that work and finance indoor spraying.
Eight countries in Africa are due to start spraying this year, and
three will use DDT as their primary insecticide.


IV. Tuberculosis, Another Overlooked Killer

To many, tuberculosis is a disease of the past, reminiscent of Keats,
the Bronte sisters, and a time when it was it was a death sentence all
over the world. But it is only the cure that is outdated.

The current cure for TB involves taking a six- to nine-month course of
four drugs, the newest of which is 40 years old. The currently used -
and not very effective - TB vaccine was invented 80 years ago. The
most commonly used diagnostic method is hit-or-miss, and it doesn't
work at all on people with AIDS. Until very recently, there was no
research designed to solve any of these problems. But while the
treatment of TB remains mired in the past, TB is, unfortunately, a
disease of the future. Once thought to be disappearing, it has roared
back, propelled by AIDS. In sub-Saharan Africa, TB cases are rising at
six percent a year. One third of the world lives with the TB bacillus
in latent form. When AIDS degrades a person's immune system, it
activates TB, which has now become the number one AIDS-related killer.
In some parts of Africa, 75 percent of people with AIDS also have TB.
And they tend to be the poorest. Sons of presidents get AIDS, too, but
they are unlikely to get tuberculosis. That has helped keep the disease
invisible even as the numbers soar.

Five years ago, however, something happened. With financing from the
Bill and Melinda Gates Foundation, researchers and public health
officials created the TB Alliance. It scours universities and
corporations for compounds - both existing drugs and brand new ideas
- that might have promise against TB. It negotiates rights to these
substances, then raises money to develop and test them, and to obtain
regulatory approval - the things no drug company is interested in
doing. A companion organization is doing the same for TB vaccines, and
another one is taking on TB diagnostic tests. As a result, a drug
pipeline that once held nothing now has several promising compounds in
clinical trials that might allow a faster, less toxic TB cure.

The story of poor people's diseases has not been a happy one, but
things are finally beginning to look up. From 1975 to 1999, only 13 new
drugs for neglected diseases were invented. Since 2000, however, 63 new
compounds have been put into development, including 18 that are in
clinical trials. Most of these new compounds are being managed by
groups like the TB Alliance, which go by the unwieldy name of
public-private partnerships. These groups - including the Medicines
for Malaria Venture , the Malaria Vaccine Initiative , and the
International AIDS Vaccine Initiative - are starting to bring real
hope to the problem of third world diseases. One World Health is a
nonprofit pharmaceutical company that is trying to find cures for
illnesses like diarrhea and Chagas disease. Its first product, a cure
for a deadly tropical parasite called visceral leishmaniasis, which
infects 500,000 people a year, is about to be submitted to India's drug
regulatory agency for approval. Doctors Without Borders has its own
organization, the Drugs for Neglected Diseases Initiative. The big
pharmaceutical companies are also starting to pay more attention.
Novartis, AstraZeneca and GlaxoSmithKline have established research
labs dedicated to tropical diseases, and many of the largest drug
companies are donating medicines. Several companies have programs to
work on diseases in specific African countries.

One reason for the surge of interest is AIDS itself. Although many
researchers who work on malaria and TB resent the fact that AIDS has
hogged most of the attention and financing, the disease has awakened
world interest in Africa and poor-country diseases. The pharmaceutical
industry has also learned an important lesson with AIDS. Its efforts to
maintain high prices and keep out cheap generic drugs - even from
poor countries that would not be able to buy brand name medicines -
led to worldwide notoriety, and even public comparisons with the
tobacco companies. The industry has not reformed. The companies have
successfully pushed Washington to negotiate clauses in free trade deals
that will make it harder for some of the world's most miserable
countries to get generic drugs. But they have begun programs of
research and donations of drugs for neglected diseases in part as a way
to burnish their image.

The AIDS pandemic has also given birth to the United Nations' Global
Fund to Fight AIDS, Tuberculosis and Malaria, which has become a
remarkably efficient ongoing source of money, although one hobbled by
wealthy governments' stinginess. The partnerships and the
pharmaceutical companies can now be assured that someone with money
will buy a new AIDS, TB or malaria drug. They may not make a profit,
but they won't take a loss. The other reason for the sudden visibility
of poor-country diseases is the establishment of the Gates Foundation,
which has $5.8 billion in active global health grants at the moment.
There is probably not a single major organization working on any kind
of vaccine, diagnostic tool, cure or treatment for any poor country
disease that does not get much or most of its financing from the Gates
Foundation.

When he began his philanthropy in 1994, Bill Gates was looking to
locate and fix market failures and get a lot of results for the buck.
He certainly has done that. But how many people have died unnecessarily
if one person - albeit one very rich person - can stimulate so much
progress in reversing a planet's worth of neglect?


Lela Moore contributed research for this article.

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2005)
Billions for Vaccines for the Poor to Be Raised in Bond Markets
(September 9, 2005)

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