PHA-Exchange> Poor People's Diseases: Do we have the medicines?

[Claudio]

Quite excellent.
Claudio

From:  "spirit" <spiritof1848 at yahoogroups.com>

 NY Times - March 29, 2006
Talking Points

The Scandal of 'Poor People's Diseases'
By TINA ROSENBERG

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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