MY RED RIBBON..YOUR RED RIBBON..OUR RED RIBBON..

Yes, that is the most important aspect in the war humanity is waging against HIV/AIDS.

It happens with time that the scientific developments bring changes that make once chronic health problems easily manageable and it will happen with HIV-AIDS as well.

But the biggest problem associated with HIV-AIDS is the social stigma that the victims face – leading to their expulsion from society – their social boycott – their ‘criminal’ humiliation (and intimidation).

And it is not country/society specific and can be felt in many societies that are seen ‘free, democratic and advanced’.

The crisis can be managed well if scientific prowess goes together with increasing social mainstreaming and acceptance of millions living with the dreaded virus – the single biggest health crisis the world has faced in the recent history – ever since it was identified in 1984.

Red Ribbon, the symbol that was created in 1991, to express solidarity with the victims, the HIV-AIDS affected people, and to spread awareness about the dreaded virus, has become the face of this movement – the movement that is yet to see significant gains in ‘social terms’ in many societies. We can easily gauge it from the fact that people related data on HIV-AIDS are still strictly confidential.

And Red Ribbon or any campaign to spread solidarity and awareness about the people affected with HIV-AIDs has to be ‘this feeling’ at its core – that it has to remove the feeling from their minds that they are ‘victims’.

But, as we all know, it is easier said than done.

In fact we consistently feel how difficult it is – to make people living with HIV-AIDS very much parts of our lives, our families, our societies – something that they are rightly entitled to – but something that gives us all a feeling of being similar to an ‘unachievable task’.

HIV

A sketch by my sister Ragini on this World AIDS Day 

©/IPR: Santosh Chaubey – https://santoshchaubey.wordpress.com/

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HIV-AIDS: SCIENCE IS ON THE JOB, LET’S PLAY OUR PART, NO DISCRIMINATION PLEASE

DECEMBER 1, 2014: WORLD AIDS DAY – IN SOLIDARITY

Thoughts on a day that has become the symbolism of our fight against HIV-AIDS – the fight seeds of which were sown 30 years ago.

Thoughts go to our brothers and sisters who are putting a brave front to recollect their lives while fighting the deadliest epidemic of the modern world that has snatched away over 25 million lives from us since its first recorded case in 1984.

Thoughts on a day that symbolizes our efforts, that tells how painstakingly the humankind has been trying to taken on and win the battle against HIV-AIDS, and that also tells how many of us make many lives more miserable and hurt the fight against the epidemic.

Yes, they can beat the odds better if we let them cruise along.

Yes, they can, and in fact they are entitled to, live livelier, complete and for many more years, like you and me, if we let ourselves to tag along them.

They are just like you and me, the perfect normal beings with the elements that define perfection in us, if there has to be some.

They are not ill. They are not inflicted with some disease. Even those in advanced stages of infection, leading to the AIDS stage from the HIV infection, can have a prolonged life with the medication available. With the treatment regime available so far, people affected with HIV-AIDS can live normal life for their entire lifetime, the ‘entirety’ that you and I have.

Then why is the stigma, the social apathy, the discrimination, the hostile attitude?

The people from among us, million have lost their lives so far, millions are still affected with new cases, new infections adding up to the statistics, they are not going to inflict us, they are not going to impose on us any sort of burden that they have been forced to carry. Science tell us. Social science tells us.

All they want is rightfully theirs.

Sharing our lives socially with them is going to make us sick – a maniacal mindset that cripples even doctors in many places – has no scientific and medical sanctity – and we all know it – it is just that we don’t want to believe in.

All they want is the peace and the dignity that we all aspire for. All they want is this stigma to be done away with. All they want is the psychological support to deal with a certain possibility that can take their lives away prematurely if left unattended or if taken carelessly.

After all, it is the common sense that says levels of stress seriously affect the way the body keeps medicines away or affects the way medicines work on us.

And this absence of common sense in us kills scores of HIV infected people much before time. We socially ostracise them. Families break ties. Society becomes hostile. And it breaks lives – psychologically, financially – and then physiologically – that is exacerbated with extreme levels of stress. We are murderers on the job here. We are mercenaries on the prowl.

All they want is all that you and I want – a respect for life and individuality – that we need to give them – we are answerable to them – after countless HIV-AIDS deaths caused due to social stigma – inflicted by us.

Yes, there have been chances. Yes, there are chances. The ongoing meticulous work, allowing the affected people to live healthier and live longer, a normal life span, just like you and me, is real, unlike our misplaced, ill-conceived insecurities that push us to discriminate against our brothers and sisters.

— When they haven’t done anything to push us to do so.

A UNAIDS report says – Serious, even life-threatening exposure to violence, stigma, loss of family, employment and property can and often do result when people are revealed as living with HIV.

©/IPR: Santosh Chaubey – https://santoshchaubey.wordpress.com/

I AM JUST LIKE YOU..(FOR WORLD AIDS DAY)

DECEMBER 1, 2014: WORLD AIDS DAY – IN SOLIDARITY – NO DISCRIMINATION PLEASE
Thoughts for us and our our brothers and sisters whom we deny the life that is rightfully theirs – in the name of silly and misplaced reasons – reasons that can never be reasoned for..

WAD Collage-2

Collage made from images sourced from Internet

I am just like you
I won’t say you to tag me along
But I won’t let you
To name call, to tag me wrong

I am just like you don’t you see
We look the same, we sound alike
I may have even the better view
Don’t you know the road I take
Shares the homes we are from
Why then you change the course
Whenever we share the it
And we reciprocate the view

I am just like you, and like you
I have my own problems
The many problems that a life faces
And has to be taken on alone
Yes, I have the one that I would pray
You and anyone should never have
Yes, I may be left with fewer days
Than what you wish to have for you

But, that is for me to face
After all, who has been able
To defy the permanence of death
Yes, I may stay less to see
But that doesn’t mean
I can’t see more of the world
Than what you wish to see
Yes, I am just like you

Yes, I am HIV Positive
But, I have learnt to see
That as just another way of life
Living positively, staying dignified
Just like you aspire to become
There is much common to us
Taking on life, looking at it every day
As you do, yes, I am just like you

Yes, I have greater visible risks
Yes, life is more unpredictable now
But, I know my alternatives
That you also know
That you also can believe in
It’s just a matter of faith
In living and let live in harmony
Don’t you see I look just like you

I am not just about numbers
I was not born to add to statistics
I am not ill, it’s just a possibility
The certainty of which can be pushed
Yes, I am well, just like you feel
I, too have a past, just like you
And my today thinks a future as well
Where I see the road going ahead

I have had my faith questioned
And my chances reassessed
And they have shown the way
Where you can help me stay longer
After all, it’s the love that heals us first
After all, it’s the hate that kills us first
Can’t you feel, please don’t classify
I am still the same I used to be

I am just like you
I won’t say you to tag me along
But I won’t let you
To name call, to tag me wrong

Yes, I am HIV Positive..But I am just like you..
..And unlike you..I am POSITIVE

WAD2014 Collage

Collage made from images sourced from Internet

YES, I AM HIV POSITIVE..BUT I AM JUST LIKE YOU

©/IPR: Santosh Chaubey – https://santoshchaubey.wordpress.com/

WORLD AIDS DAY 2013: THE PATHOLOGY OF SOCIAL STIGMA

Officially, HIV turned 32 yesterday but the fight to control the single largest killer of the mankind in the contemporary history through its pathological and sociological killing effects is yet to see a pathbreaking breakthrough.

Though, the science of HIV-AIDS has witnessed a regular improvement in the treatment regime over the years reducing the new cases of infection, delaying the transformation of virus from HIV to AIDS stage in the infected persons, even having the rare instances of reports saying of HIV cure like the world debated this year the case of a Mississippi baby.

As reported, a Mississippi baby, who was HIV infected from birth, was found HIV-infection free in a round of medical checkup earlier this year. A CNN report said it happened quite easily. Her antiretroviral medication was stopped when she was 15 months old. She was found infection free when she was taken for diagnosis at her second birthday. Scientists believe it could have been due to the high-dose of the combination of three antiretroviral medicines given to the baby within 30 hours of birth.

It was only the second claim of HIV cure and the first in case of a child after the ‘Berlin Patient’ Timothy Ray Brown was declared HIV-cured in 2007.

Then there have been other claims of cure and advances in the medical R&D on HIV-AIDS telling us the sincere work is being done in-spite of the global geopolitics on providing funds for the research.

The ‘Berlin Patient’ is not a patient anymore. The miracle Mississippi baby is not HIV-infected anymore. They are ‘functionally cured’ of HIV infection.

That is the science part of HIV-AIDS epidemic. The scientific achievements and improvements do give us reasons to hope for a better life and enhanced protection and security from the killer medical circumstances of the viral epidemic, but its sociological aspect leaves us staring in the dark, damaging in process, whatever little the medical advancement achieves.

Yes, there are attempts globally to create and spread awareness about HIV-AIDS to reduce and end the discrimination against the infected people. There are multiple campaigns running globally and nationally in many countries. Work being done by India’s NACO (National AIDS Control Organization) is exemplary. There are many transnational agencies working out tirelessly to make the societies more inclusive for the HIV-AIDS affected people.

Events like the World AIDS Day are telling examples of the hard work being put into. From a one-day event, it has been extended into a theme-based campaign running throughout the year.

Though, it is the 25th anniversary of the World AIDS Day this year, if we, still, cannot talk about the progresses made in containing HIV-AIDS in a satisfactory way, it is because of the social discrimination and apathy towards the HIV-AIDS affected.

The social stigma associated with HIV-AIDS continues. And it is universal. The discrimination – it is not just by the uneducated, less educated, unaware, or poorly-aware, but it is also by the people considered to be from the social classes who could show the way in bringing the HIV-AIDS affected to the mainstream of the society, thus giving them the dignified life they deserve, just like you and me. Reports are common that even doctors refuse the treatment once they find the patient is HIV/AIDS affected. Schools refuse or expel such students. Societies, even the most civilized ones, from the upper, opulent level of the social formation, easily make the HIV/AIDS affected an outcast.

The HIV-AIDS affected, who can live a normal life, just like you and me, if we let them, not treating them as outcasts – they form a large part of the global human population – WHO and UNAIDS put them at 35.3 million. How can we exile them, leave them to die?

Whatever small or big achievements we achieve medically year-on-year to talk about on days like the World AIDS Day, we, as a society, cannot head anywhere until we check this problem, until we give the HIV-AIDS affected people a life that we live, until we see them as the normal people just like us, until we give them their right to a dignified life back that we have usurped from them.

Science can lead us to the control and cure of the pathological symptoms of HIV-AIDS, but what about our very own pathological symptoms that push us to treat the HIV-AIDS affected people as the social outcasts?

They need our care, our support, the emotional connect, to win the fight against HIV-AIDS. Can’t we give them their rightful due?

©/IPR: Santosh Chaubey – https://santoshchaubey.wordpress.com/

WORLD AIDS DAY 2013: SOME RANDOM OBSERVATIONS

LIGHT, THOU ART THE HEALING. LIGHT, THOU ART THE SOUL.

Life finds its flow. Light finds its intensity.

Though there are many more silent killers than the HIV/AIDS, the social stigma attached with this viral epidemic makes it a killer in the real sense. Though not curable yet, the advances in the health science with more evolved antiretroviral therapy has made life easier for millions of the HIV-positive people across the world so much so that they can now maintain even the sexual contact with their partners with proper precautions.

HIV/AIDS treatment and further research has always been a politically sensitive issue as the current treatment regime and the further research both are highly expensive and prevalence of the HIV infected people in many low-income (69 per cent of the HIV infected are living in Sub-Saharan countries) and developing countries only exacerbates the problem.

Reports on the World AIDS Day 2011 said, “It’s more of a manageable chronic infection and not a life-threatening one now.” World Health Organization (WHO) said, “Increased access to HIV services resulted in a 15% reduction of new infections over the past decade and a 22% decline in Aids-related deaths in the last five years.”

Much was said and debated as the HIV-AIDS completed its 30 years in June 2011. Obama had announced new resolve to combat the HIV-AIDS menace. What could happen and what could have happened since then is to be seen on this World AIDS Day.

“Getting to Zero: Zero new HIV infections. Zero deaths from AIDS-related illness. Zero discrimination” – was the theme of the World AIDS Day last year, and is this year, too. According to the World Health Organization (WHO) then, the goal to bring 15 million HIV-infected people under the treatment regime of the antiretroviral drugs by 2015, though a tough assignment, looked within reach given the latest global statistics then.

Like every other health problem, if the HIV-infected people, too, are taken into the mainstream and given a holistic environment of medical and emotional care, every HIV target would be much easier to scale and achieve. Countries across the world need to plan and think large scale social interventions and mobilizations and now is the time.

Life finds its flow. Light finds its intensity.

LIGHT, THOU ART THE HEALING. LIGHT, THOU ART THE SOUL.

©/IPR: Santosh Chaubey – https://santoshchaubey.wordpress.com/

GLIVEC PATENT APPEAL OF NOVARTIS REJECTED: A GLOBAL REPRIEVE

It was a big concern and came as a big relief.

It was about social concerns Vs commercial interests and in a world where over a billion people live in absolute poverty ($1.25 a day) while another billion plus people do not have a comfortable living (between $1.25 to $2 a day), it was a needed reprieve.

It was a court battle in an Indian court that the whole world was watching, from governments, to corporations, to activists, to people, calculating the aftermath of the outcome from their perspectives.

And the way Novartis reacted on Supreme Court of India rejecting its Glivec (www.glivec.com) patent appeal tells us about the scale of the stakes. Reportedly, the Swiss pharma major has said that it would be more cautious about investing in India in future.

But the SC decision is not about India only. It is for the billions across the countries who cannot afford healthcare cost.

According to a report*, in 2008, 54 per cent of the new cancer cases were from African and Asian countries while the region accounted for 61 per cent of the cancer deaths. It is just a natural corollary when such reports point out that the less developed regions account for greater number of new cases and deaths because majority there cannot afford the treatment available.

A report** on HIV/AIDS prevalence says, in 2010, around 30 million of the 34 million adults and children living with HIV/AIDS were from African, Asian and Latin American countries. Sub-Saharan Africa alone accounted for almost 23 million cases. Naturally, these regions have world’s poorest countries with no or very poor health infrastructure.

The predominating stand on healthcare in context of these concerns has to be socially oriented. Here, the social concerns have to prevail over the commercial interests when there are billions not able to afford the treatment costs resulting in death of millions annually.

The SC’s Glivec decision has to be seen in this context only.

In case of life threatening diseases like Cancer or HIV/AIDS, the cost of the diagnosis as well as of the medicine is out of reach of almost of the population segments living in the poor countries.

Pharma giants claim they develop such medicines after pumping billions of dollars in R&D. Many of such medicines, known as blockbuster drugs (generating revenue of a billion dollar or more a year) are priced astronomically high in order to recover the costs.

Initially justified, soon the break-even point and the ethical business of profit-making give way to a monopolized profiteering exploiting the legal tools like the exclusivity patent or the extended patent once the exclusivity patent expires. In some cases, it is genuine. In most of the cases, it is intended to manipulate, a practice known as ‘evergreening’ where the manufacturer goes for the minimum possible modification in the drug so as to meet the patent extension criteria.

In the Glivec case, the SC didn’t find Novartis’ claim of further changes in Glivec innovative enough to grant it patent.

Novartis markets the drug Imatinib under trade names Glivec and Gleevec (US). Some other trade names for the drug are Glivic and Milatus.

Glivec is an anticancer blockbuster drug generating billions of dollars of revenue annually. Developed in 90s and hailed as ‘magic bullet’ in cancer treatment by the TIME magazine in 2001, Gleevec had a worldwide sale of $3.9 billion in 2009. Though it is not sure if the figure is for overall Imatinib sale but it tells Novartis has reaped enough of the profit from this blockbuster molecule alone.

And when it’s such an important medicine (some say it is miraculous in effects on some forms of Leukemia), it is to be seen and regulated that it reaches as far as possible, to the cancer patients who cannot afford it.

The ways out are to make the medicines available free as happened in case of Tuberculosis or to make the treatment available at affordable cost. Now, the profiteering Big Pharma cannot be expected to play such a role.

Tuberculosis was successfully routed out after the multi-drug therapy was made available free of cost at a mass level. HIV/AIDS spread has seen some significant control after the affordable antiretroviral treatment has been made available in poorer countries where maximum number of the affected live.

At a time, when governments and global bodies like the UN are finding it hard to fund free shipments of the antiretroviral medicines due to slowdown in the global economy, the generics have come as a big reprieve saving millions of lives. Cancer has no such provisions like the antiretroviral treatment on a worldwide scale and availability of the generic medicines is the most important ray of hope for the cancer patients who cannot afford the costly medicines of the big pharma companies.

So, the cost-barrier has to be brought down, either by making free shipments available or allowing other pharma companies to make the same medicines (generics) at fraction of prices, so that it can reach to the maximum number of the affected people.

And why not given the sensitivity of the price points involved. If we take the Indian examples where the country’s apex court has rejected the patent appeal of blockbuster drugs, it becomes clear.

Before Glivec, the SC had rejected Bayer’s patent appeal for its anti-cancer drug Nexavar that brought down the price, from Rs. 2,80,000 for Nexavar to Rs. 8,000 a month for its generic version. In case of Glivec, the cost of the generic version is around Rs. 10,000 a month while Glivec costs Rs. 1,20,000.

Given the high number of cases in low income segments, generics are the effective way to make the treatment available to a larger section of the global population.

The Glivec decision by the Supreme Court of India has once again given an opportunity to reiterate it. Even if the ruling comes as a short-lived reprieve as some analytical reports are pointing out as it would result reduced R&D and new medicines launches in India, it has to be appreciated for the fact that nothing is more important than saving human lives.

An analytical article in New York Times wrote on the development: “The ruling is a landmark in one of the most important economic battles of the 21st century, in which rich nations that increasingly rely on the creation of idea-based products like computer programs and medicines require poorer countries to pay for their ideas. But some countries – particularly India, Brazil and China – have begun to challenge the price they must pay, particularly when the ideas-based products are life-saving medicines that their people desperately need now.”

©/IPR: Santosh Chaubey – https://santoshchaubey.wordpress.com/

* http://www.cancerresearchuk.org/cancer-info/cancerstats/world/demographics/demographic-facts-for-the-world-population

** http://www.avert.org/worldstats.htm

THEY ARE ‘FUNCTIONALLY CURED’ OF THE HIV INFECTION!

This is the best news yet of the century and I can say has the potential to become the best news of the century even if 88 years are still to go. A two-and-half year old baby has been cured of HIV!

AIDS kills millions every year. HIV infects millions new every year. The largest number of HIV/AIDS infected is in the poorer countries and funding the HIV/AIDS treatment including the R&D has become a big bone of contention and spans a body of discussion on the political motivations and obstructions on funding to find the cure of the humanity’s most deadly enemy yet.

As reported, a Mississippi baby, who was HIV infected from birth, has been found HIV-infection free in fresh round of medical checkup. As a CNN report said it happened quite easily. Her antiretroviral medication was stopped when she was 15 months old. She was found infection free when she was taken for diagnosis at her second birthday. Scientists believe it could have been due to the high-dose of the combination of three antiretroviral medicines given to the baby within 30 hours of birth.

It is only second claim of HIV cure and first in case of a child. Further studies into the case would certainly be beneficial to the countless babies born with the virus in the poorer countries where the epidemic continues to be spreading its tentacles.

The baby’s case may be not be groundbreaking immediately for millions of HIV/AIDS affected lives, as the doctors say it is ‘grossly unique’, but such cases are the confidence boosters, and the subsequent R&D would certainly open new doors to understand and rapidly develop a possible cure for the virus.

This is the second case after the ‘Berlin Patient’ Timothy Ray Brown declared HIV-free and the next leap of faith to work even more intensely to find the solution to subdue the killer that has been taking lives for the past 30 years.

Timothy was diagnosed in 1995. In 2007, while undergoing chemotherapy for Leukemia, he was given a stem cell transplant. The donor in this case was some someone who had inherited a rare gene mutation resistant to the HIV virus. Since then, his HIV infection level has been below the detection level.

There were high costs involved in Timothy’s case but the baby’s cure has come with normal course of antiretroviral medicines. There might be some unique medical conditions leading to the cure in both the cases as it is being said. But what matters is the tag ‘it has been cured’ even if ‘functionally’, i.e., they are now off the antiretroviral medicine regime.

Since Timothy’s case in 2007, there have been other claims of cure and advances in the medical R&D and the humanity now has the second validated claim just after 5 years.

It indeed can be a big stimulus for the scientists and the governments to give the required push to find a solution to the lethal weapon that is killing mankind, not just physiologically but sociologically as well.

The ‘Berlin Patient’ is not a patient anymore. The miracle Mississippi baby is not HIV-infected anymore. They are ‘functionally cured’ of the HIV infection.

Given the severity and the medical complexities into the dimensions of the word ‘cured’ in these two cases, it cannot be said when the journey would see the transition, from a ‘functional cure’ (as in these two cases) to the ‘cure’ leading to the complete eradication of the virus, but these two cases say the journey is on its way.

©/IPR: Santosh Chaubey – https://santoshchaubey.wordpress.com/