Tsetse fly

The  recent launch of new initiatives on helminth diseases and HIV/AIDS drugs for infants by the Drugs for Neglected Diseases initiatives led me to wonder about the broad burden of neglected diseases. One such is the benign sounding sleeping sickness disease which, carried by the tsetse fly, still today causes devastating human deaths. Another is the disease known as elephantiasis that causes people to suffer from debilitating swollen limbs and genitals as a result of thread like worm infections.

Swollen limb from Elephantiasis

World Health Organisation (WHO) defines human African trypanosomiasis (sleeping sickness) and lymphatic filiarisis (elephantiasis) as just two among 17 neglected tropical diseases that viciously affect at least one million people each year, leaving debilitating illnesses and deaths in their wake for sufferers and families. Referring to the 17 neglected tropical diseases, WHO comments that these diseases “thrive in impoverished settings, where housing is often substandard, environments are contaminated with filth, and disease-spreading insects and animals abound”.

Neglected tropical diseases are endemic infections in 149 countries and territories, varying in their source of infection from viral, to bacterial and protozoal origins. The burden of these diseases adds to the already heavy burden of respiratory tract, diarrhoeal, HIV, tuberculosis and malaria infections that make up the top 5 global infectious disease killers, additionally considered as neglected diseases.

Knowledge about how prevent and treat many neglected diseases is not lacking; instead, the intimate relationship that they share with poverty shapes their opportunities to infect, maim and kill. These diseases have not been specifically neglected by robust health systems, but rather poverty and failure to implement proven solutions has driven their neglect for centuries. So neglected tropical diseases define a neglect which accompanies many other aspects of daily life for poor people in modern day tropical countries.

“Cities are growing and growing but without infrastructure of sanitation… Do we need more research on that?” Peter Piot, Director of the London School of Hygiene and Tropical Medicine asks rhetorically. “I doubt it. We need more on the how to do it” he considers. Emphasising the lack of well implemented solutions, Kevin De Cock, Director of the Centre for Global Health at the US Centres for Disease Control, adds “underlying social and developmental factors like inadequate access to water and sanitation, or to adequate living conditions – often dismissed as “old problems” – have been frustratingly difficult to address”.

As of October 2010, with the publication of their first report ‘Working to overcome the global impact of neglected tropical diseases’, WHO has considered controlling these diseases to be a feasible goal. For Piot “the ‘so-called’ neglected tropical diseases are nearly fully funded, except for basic research”. At the World Health Assembly meeting in May 2011, the feasibility of controlling and eliminating neglected tropical diseases was re-affirmed with resolutions on the progress towards eradicating guinea-worm disease (dracunculiasis). Reflecting on advances made, De Cock comments “a number of neglected tropical diseases, including onchocerciasis and lymphatic filariasis, are currently being controlled or are close to being eliminated because of mass drug administration”.

While the global dilemma grows between high-income countries’ provision of financial support for lower-income countries with rapidly growing economies like Brazil, Russia, India and Brazil, the poor in these developing country superstars remain marginalized and disproportionately affected by neglected diseases of poverty. “Health in general requires more funding, and global health needs global financing” affirms De Cock. “This is especially true for some important areas that have been neglected, such as sanitation”. Prioritizing the control of neglected tropical diseases in endemic countries will inevitably mean effectively implementing known health interventions like sanitation. Piot considers that “because of AIDS there has been a real interest in funding for global health” and adds that “collateral benefits” could ensue for neglected diseases. Ensuring that this collateral benefit opportunity is grasped for neglected tropical diseases requires collaboration and “HIV, polio, and malaria programs offer an entry point for other interventions at the community level” advises De Cock.

Global health advocacy to combat neglected diseases has been highlighted by the Millennium Development Goals, and a spotlight shines brightly on the top 5 killer infectious diseases; it would seems that with globalization, a global political imperative to tackle neglected diseases effectively is growing. After increasing the pledge made by the Bill and Melinda Gates Foundation towards delivering vaccines with the Global Alliance for Vaccines and Immunization (GAVI), Bill Gates reflects that tackling neglected diseases through vaccination programs is cost effective and “helps countries to get to a point where they will be self sufficient”.

“It’s a question of values” considers Gates. As such, provision of sustainable and substantial health benefits for citizens globally, and progress towards prevention of neglected tropical diseases could herald social and economic progress. Governments from the 149 countries and territories whose citizens suffer disproportionately from these diseases, are now being challenged to meet the new aspirational values of equity and partnership that high-income global health donor players are increasing throwing their way. By working with high-income partners and ensuring public health as a policy and implementation priority for their citizens, there is opportunity for endemic country governments to act as powerful advocates for neglected tropical disease prevention and control.

Potential future collaborative approaches to global health which integrate health systems could benefit neglected tropical diseases, making these diseases an integral part of the health systems strengthening packages endorsed by global donors and endemic country authorities. But in order to gain health benefits, sincere reflection on why existing methods have not been implemented to combat diseases must inform collaborative approaches to health system strengthening. Without reflection and collaboration at all levels, diseases could remain neglected, while both established and new interventions continue along the same neglectful route as the diseases which they seek to eliminate.

An additional global pandemic imperative for control, elimination and deeper understanding of neglected tropical diseases underlines the self-interest benefits for high-income countries. De Cock observes “we never know which ones could become global threats… we have to be ready to diagnose, investigate, and respond to them wherever they occur”.

Now lately I’ve been plagued by a slight, almost inaudible ringing in my ear that, according to the extensive research I immediately did on WebMD, seemed clearly the sign of an inoperable brain tumor. Not one to delay the inevitable reckoning with my own mortality, I made an appointment with my local physician at the clinic.

Dr. Ernsthaft is a no-nonsense type of doctor who came in and immediately asked me what the trouble was. I patiently explained to him the inaudible ringing in my right ear.

“If it’s inaudible, how do you know it’s there?” he asked, rather coldly I thought.

“I can sense that it might be there,” I replied. “It’s sort of a mental ringing.”

“Have you had any dizziness?”

“Well,” I told him, “I’m not likely to make a roster spot on the men’s Olympic gymnastic team, but I can still pick up the soap in a shower.”

“How about your hearing?”

“What? Ha. Ha.”

“How about your hearing?” he asked more loudly.

“Oh fine, just a little ‘brain tumor’ humor there,” and I chuckled guiltily. He didn’t seem amused.

“Well let’s look at that ear.”

He then proceeded to examine my right ear which he pronounced “completely plugged with wax.” After a good five minute of flushing, he managed to remove a huge plug of the stuff.

“There you are, Mr. Houseman. That should do the trick.”

For a moment I felt relieved until he then explained that he was going to do some “routine” blood work.

“What kind of blood work,” I asked nervously.

“Oh you know, some screening tests. Make sure there’s nothing abnormal going on.”

“Like for cancer?” Gulp.

“Well, yes certain cancers are one of the things that might show up.”

“Are we talking about the ‘Lance Armstrong/Live Strong/win the Tour de France kind of cancer or the ‘Terms of Endearment’ kind of cancer?”

He seemed to get a bit exasperated at this question.

“Mr. Houseman, this is just a simple diagnostic test. Please go to the lab and call me in the morning for the results.”

“Dr. Ernsthaft, I have to admit that, well, I’m a bit of a hypochondriac…”

“Really? I could hardly tell.”

“…yes, and well, is there anything I could take to, you know, relieve my anxiety?”

He took a long look at me. “How about 30 tabs of alprazolam, a strong fast-acting valium.”

“Oh, that would do just fine.”

“Great. Now if you don’t mind, Mr. Houseman, I have actual patients waiting…”

After the blood test, I headed straight away to Walgreens to get the alprazolam prescription filled. Clearly, by tomorrow, I’d be faced with the possibility of 1) a brain tumor, 2) rare blood disease, or 3) leukemia, and I needed some pharmaceutical relief to help me draft my Last Will & Testament that evening.

Unfortunately, my fear of my impending terminal disease had filled me with such anxiety that I immediately opened the bottle of alprazolam in the store, grabbed a RC Cola off the shelf and chugged down at least three of the harmless looking little green pills to help steady me for the car ride home, figuring that if the recommended dosage called for one tablet, three would be three times the relief needed to allow me to call all my friends and relatives to start making my final good byes.

This may, looking back on it, have been a slight error in judgment.

Who knew that alprazolam would take effect so quickly? I was just going to check out the homeopathic health product aisle for a second and pick up my monthly supply of flax seed, when I noticed feeling slightly funny. Not only was I no longer concerned about the nuclear capabilities of Iran or the prospect of a far-right governing coalition in Austria, I could no longer remember my name. In addition, an overwhelming desire to purchase large plush toilet seat covers inexplicably came over me, and before I knew it, I was headed down the housewares isle drooling (literally) over plug-in electrical outlet air fresheners and solar-power nose hair trimmers (which upon reflection, probably should not have been in housewares).

Strangely thirsty, I further compounded my mistake by wandering into the food and beverages isle and snatching a 2 liter bottle of Jolt off the shelves and then discarded the empty at the “Toys for Tots” collection bin near the registers. It was at that point a very nice man who must have worked for Walgreens (or else had a predilection for red vests) came by and said something to me, but by that point I was having trouble understanding English. I asked him if he happened to speak Old Norse or Aramaic (I majored in linguistics), and after a somewhat rude reply, I promptly challenged him to a duel with the weapon of his choice: orange foam swim noodle or giant twizzler stick. After getting no reply, I’m afraid I took matters into my own hands, and in a alprazolam/Jolt induced rage chased him around the store with a EZ Wipe ceiling duster until I collapsed somewhere in Feminine Hygiene Products.

A Short List of Some of the Diseases I’ve Believed I Was Dying From

1. Lou Gehrig’s Disease (aka ALS). I was in an brutal computational lingusitics seminar my first year of graduate school and as I sat taking notes, my thumb on my writing hand began to twitch uncontrollably. That evening I looked up “muscle twitches” on some physician’s website and read that Lou Gehrig’s Disease also has muscle twitches as a symptom. Massive weakness and paralysis as well of course, but the muscle twitches were enough for me. The next two weeks were an agony of despair, convinced that I was Stephen Hawking-wheel chair/drinking through straws bound. The first doctor I saw about this informed me that “if you had Lou Gehrig’s disease, you’d know it” and threw me out of her office. The second, after another 2 weeks of black sleepless terror, was much kinder. He explained that he got muscle twitches all the time and confessed that in Med School, he too had thought he had it. Also, he told me, “Lou Gehrig’s disease doesn’t present until at least the fourth decade of life.” Given that I am now in my fourth decade of life, I worry about Lou Gehrig’s disease all the time.

2. Parkinson’s Disease. Actually, I’ve never feared having Parkinson’s Disease. I have no idea even what Parkinson’s Disease is, except that it is genetic and strikes later in life. In order for me to truly fear a disease it must have three characteristics: 1) It’s terminal; 2) It’s drawn out and painful; 3) It has to have vague symptoms. I can’t get worked up about a heart attack for example (tends to be sudden, you know for sure when you’re having one) and I won’t worry about Ebola until I start bleeding out the eyes. Critics may object that a brain tumor (#3 below) is not always terminal, to which I reply that I only worry about the terminal brain tumors.

3. Brain Cancer (aka: ‘a Tumor’). This is a great disease to think you have because just about any neurological tic can be attributed to it: headaches, tingling, ringing of the ears (my favorite as we’ve seen!), dizziness, nausea, etc. There is not a vague, ill-defined bodily symptom I can’t in my fevered imaginings link back to a big, and inoperable, tumor slowly devouring my cerebral cortex.

4. AIDS. I had unprotected sex with Margo Neumann at her parent’s house the summer after my sophomore year of college and became convinced after reading my sister’s first year Nursing textbook that the night sweats I was then regularly having were a sign that I was HIV+. It turned out I was actually suffering from a nasty case of bronchitis. I’ve since had night sweats fairly regularly after that, each time wondering if that latest sexual tryst has now marked me for death, but they are in fact mainly caused by the anti-anxiety medication I take. Oh the supreme irony!

5. Colon Cancer. I only really worried about this once, in my freshman year of college, when I started seeing blood in my stool (aka ‘shit’). I called my mother in tears convinced I had some cancer of the bowels. She calmly suggested I see a doctor and that it was most likely something else. The nice doctor at the University Health Service inserted a gelled finger in my rectum and informed me that I had hemorrhoids. “Have you ever had anal sex?” she asked. I was shocked. I told her that I had never had anal sex, but strategically left out the “experiment” with the girl I met at that one party.

Ok, multiple experiments.

[Image taken from x-ray delta one's Flickr.]

This time, Peter, a spry 55 year old man, has let his disdain for dentistry impair his better judgment. A known cavity had started irritating Peter 12 months ago. Initially, he ignored it but then as the gnawing pain worsened, he palliated himself with his collection of single malts, taken neat of course. However, the pain began to interfere with his ability to enjoy BBQ pork sandwiches and this he would not have. Off to the dentist.

There he learned that his tooth was not salvageable. It required extraction. “Fine,” barked Peter, who then uneventfully underwent a controlled tooth extraction by the skilled hands of his dentist.

Three weeks later, Peter had resumed life in his dual roles of both an obsequious accountant and a committed but generally annoying husband. At night one evening though, he began to have a fever. And over the next few days, this fever combined with an insidious malaise and dizziness. Quickly though, these symptoms began to pale in comparison to the headache he developed. The headache was constant and unremitting, unresponsive to every over the counter medicine he could purchase.  When he came home from work that Friday though, his headache was bringing him to tears. He was sweating. He decided to take a seat on his prized leather couch and wait it out.

A few hours later, his wife returned home and found him with a vacuous stare on the couch, drenched with sweat. Further, she noticed that the left side of his face was droopy. When she asked what was wrong, he muttered some unintelligible syllables. When she asked him to get up, he made some clumsy gestures but did not move his left arm or leg.

At the hospital, Peter was much unchanged. He had a temperature of 40 degrees and a blood pressure of 90/50. An odor of bodily failure filled the room. Simply put, he looked terrible.

What’s going on? What to do?

Check back next week for the explanation.

Photo by PinkStock Photos

–

To summarize, Peter is a 55 yr old man with a history of having had a tooth extraction who now comes to the hospital with an acute neurologic illness consisting of fever, left sided weakness, and near coma.

The emergency room physicians astutely recognize Peter’s problem as neurologic in nature and thus organize a stat CT scan of the brain.  Because of Peter’s symptoms of left sided weakness, we expect to find a lesion of some sort on the right side of his brain (Remember, the right side of the brain controls the left side of the body and vice versa).

Figure 1 – Note the arrow pointing to the circular lesion in right side of the brain (Sides are reversed on CT scans).

As pictured above, our suspicious indeed prove correct. Peter does have a lesion on the right side of his brain in an area that would certainly cause left sided weakness (For you hobby anatomists, the lesion is located medial to the genu of the internal capsule, abutting both the caudate nucleus anteriorly and thalamus posteriorly). Needless to say, the abnormality is in a bad spot as its bang next to the fibers that send control signals from the right brain to the left body.

At this point, we know that Peter appears ashen and has a circular lesion pushing into his brain. Because of his co-morbid symptoms of fever, sweats, and few day history of feeling unwell, we can justifiably surmise that Peter has developed a blood infection and an abscess in the brain, likely originating from the tooth extraction he had undergone weeks prior.

Blood infections(bacteremia and/or sepsis) after dental work are thankfully rare phenomena. Interestingly, after any tooth extraction, periodontal surgery, and even tooth brushing, we all have a bit of bacteria enter our blood stream. However, our immune systems are superbly effective at ridding us of these pathogens, usually within 30 minutes of the event. In fact, if you think of the number of times you brush your teeth in a lifetime, the risk of a significant blood infection related to your teeth is vanishingly small. In certain populations of patients, such as those with artificial heart valves, however, the risk is slightly higher. These bacteria can latch onto these prosthetic devices, grow and cause a condition known as infective endocarditis, which if left untreated can lead to a life threatening infection and heart failure. In Peter’s case, he was just extremely, unbelievably unlucky.

Peter is in serious danger. In addition to the infection in his body, he has an organized collection of bacteria(abscess) pushing into his brain. Because this abscess is not supposed to be in the brain, the pressure in the brain increases. When the pressure in the brain increases, neurologic symptoms ensure, which include weakness and eventually coma and/or death if the pressure gets too high.

As such, Peter needs emergent surgery.  Because the abscess is located deep in the brain, traditional brain surgery to open the brain at the surface and remove the abscess is not an option, as gaining access to the abscess would endanger important neural structures. Instead, Peter needs a more minimally invasive approach wherein the abscess can be drained with only minimal damage to surrounding neural structures.

As such, Peter underwent a so-called stereotactic drainage of his abscess. In this procedure, a special CT scan is performed which is then loaded into a computer in the operating room. Then using fixed external landmarks on Peter’s head, the location of Peter’s head in real space is married to the images of Peter’s head in virtual space. In doing this, a special wand can be used during surgery to point to exactly where we are in Peter’s brain as the surgery is underway. More importantly, though, it will allow us to plan our placement of a catheter into the abscess and drain it while avoiding other critical structures.

Peter’s operation went smoothly. With the aid of surgery and antibiotics, Peter recovered over the next few weeks. However, he was left permanently weak on the left side of his body due to the damage the abscess wrought on his brain.  For us doctors, it was satisfying to know his life was saved but sobering to realize we could not undo all the havoc caused by the infection. For Peter and his family, they were grateful for his survival but appropriately contemplative. Why did this rare event happen to Peter specifically? Why couldn’t modern medicine not only cure his abscess but also fix the weakness in his arm and leg? Why did Peter wait so long to have his tooth examined? Would it have mattered if he had?

The truth is, we just don’t know.

As half the universe and tribal folk in the desert have heard by now, actress/healthy living guru Gwyneth Paltrow has written a cook book.

And while its release last week had critics everywhere laying into poor Gwyn, calling her a “wannabe,” “copy-cat,” and even an ”anorexic chef,” her book, My Father’s Daughter:  Delicious, Easy Recipes, is actually quite good.  So stop the hating, haters.

Of course I went out and purchased this cookbook the day it hit Barnes & Noble, making it one of two cookbooks I own.  I mostly bought it to read the forward, where Gwyneth talks about her own current diet, her dabblings in the macrobiotic sphere, her belief that food can be used to cure disease and illness, and a little section on “Why I Don’t Eat Red Meat.”

The recipes themselves don’t particularly interest me—which isn’t to say they aren’t good.  While I love to cook, and do so often, I’m not inclined to follow recipes and spend the time it takes to make many of the dishes in this book.  But, for a devoted kitchen-dweller, or those looking to spice up their usual repertoire come family meal time, My Father’s Daughter is a pretty useful resource.

There are recipes for pancakes and muffins, pasta sauce, fish dishes, sandwiches, salads, desserts and more.  And despite Gwyneth’s glamorous aura, her recipes are mostly traditional comfort foods geared toward families and busy individuals with kids.

Best of all, Gwyneth and her book are all about whole, unprocessed REAL food, and advocates supporting local farmers and going organic when possible.

Really, there’s not much to hate about this cook book.  It’s filled with recipes for good, mostly healthy food that real people can make.  What more could the average person want?

If you’ve read the Health, Lifestyle & Wellness section of any newspaper or online blog lately, you’ve likely encountered a feature or two on “The Dukan Diet,” the latest “miracle weight-loss” eating plan.

In fact, the diet is supposedly SO tremendous that princess-of-England-to-be, Kate Middleton, is following the plan to shape up for her upcoming nuptuals to Prince William.

Developed by French physician Pierre Dukan, the diet is similar to Atkins in that it centers around protein.  However, unlike Atkins, the Dukan Diet allows only lean proteins, such as fish, chicken breast, eggs, etc., and insists that participants ingest copious amounts of oat bran.

There are 4 phases to the diet, summarized below (excerpt from WebMD):

• Phase 1, the Attack phase, is quite simple: Eat all you want of lean protein, along with 1.5 tablespoons of oat bran and 1.5 liters of water daily. That’s it.  Dieters can choose from 72 lean or low-fat meats (excluding pork and lamb), fish, poultry, eggs, soy, and nonfat dairy. 
• Phase 2 is the Cruise phase, which allows unlimited amounts of 28 non-starchy vegetables every other day along with a core diet of unlimited lean/low-fat protein and 2 tablespoons of oat bran. Carrots, peas, corn, and potatoes are not on this list of vegetables but appear in the next phase.
• Phase 3, Consolidation, allows unlimited protein (including pork and lamb) and vegetables every day, along with one piece of low-sugar fruit, 2 slices of whole-grain bread, and 1 portion of hard cheese. Dieters can also have 1-2 servings of starchy foods and 1-2 “celebration” meals (in which you can eat whatever you want) per week during this phase.  In this phase, you begin the lifetime commitment of eating the core diet of pure protein one day each week, preferably the same day.
• Phase 4, Stabilization, is the maintenance portion of the plan.  The author promises you can eat whatever you like without regain if you follow his rules – one day a week, follow the same all-protein diet as in Phase 1; eat 3 tablespoons of oat bran a day; and walk for 20 minutes daily and never take elevators or escalators

I wouldn’t necessarily call this diet a restrictive one, as it does allow various proteins, dairy, whole grains, fruits and veggies—all of the major, good-for-you food groups.  However, one must have a taste for meat, no doubt, making this diet impossible for a vegetarian or vegan.

Moreover, I don’t like how the Dukan Diet advocates eating vegetables every OTHER day.  That way of eating is nutritionally impropper, for sure.  Vegetables and fruits should be heartily consumed every day, as they are the essential nutrients our body craves to give us energy, vitamins and minerals, and a glowing complexion and cheery disposition.  I’m ALL about protein for keeping the appetite satiated and metabolism revved, but never at the expense of plant-based, natural foods that come from the earth.

Should you try this diet, you’ll most likely lose weight, as a typical day would be 2-3 cups of oat bran, lots of chicken breast, a couple tuna fillets and tons of water.  The thermic effect of all the protein you’re consuming (the calories you’re body expends just to break down the protein) will definitely create metabolic burn.  However, this is also a bit of a boring diet, and definitely should not be followed long-term.

I know it’s trite, but the best diet truly is a BALANCED one made up of foods derrived from the EARTH.  As I like to say, “if you can’t kill it or pick it, don’t eat it.”

For all you chocolate fiends out there forced to curb your habit in an effort to eat healthier, Rawtella may be the product for you.

Like its cult-favorite predecessor, Nutella (which has such a following that a Facebook group exists in its honor), Rawtella has the same rich, chocolaty-hazelnut flavor, but without any of the saturated fat and artificial ingredients found in the former version.

Rawtella is a 100% raw, organic and vegan chocolate spread that contains fresh soaked/dehydrated hazelnuts, organic raw cacao nibs, and raw coconut sugar.  Nothing else.

Each 2-tablespoon serving will still set you back 190 calories and 17 grams of fat, so it’s by no means a “diet” or “health food.”  However, if you’re going to indulge and have a craving for something decadent, chocolaty and sweet, why not pick the lesser of two evils and go for something all-natural that won’t pollute your body?

After the success of its anti-smoking campaign, which featured a woman with amputated finger-tips, the Department of Health (DOH) decided to pursue a similar tactic with HIV prevention. The DOH released TV spots showing terrified men, disintegrating brains, and a now infamous photo of an anus with cancer.  A deep voice stated: “When you get HIV, it’s never just HIV.  You’re at a higher risk to get dozens of diseases, even if you take medications.”  Next, they rolled out subway posters, which reach an even wider audience.

For many LGBTQ and HIV advocates, the campaign seems to be a reversal of thirty years of work to decrease stigma associated with HIV.  According to the HIV-positive blogger Shawn, of Shawn & Gwenn, “It’s got a really retro feel, like the commercials and ads that used to run nationwide in the 1980′s, in the days when HIV was considered a death sentence.”

HIV Health and Human Services Planning Council of New York stated in its letter to Mayor Bloomberg, “The PSA intensifies stigma against people living with this condition and against gay and bisexual men, in general, at a time when we are encouraging young MSM to be tested for HIV, and people living with HIV/AIDS (PLWHA) to enter care and anticipate a long and healthy life.”

It is widely accepted that stigma and homophobia perpetuate the spread of the epidemic in a number of ways – by impeding HIV testing, disclosure, and treatment; decreasing feelings of self-esteem (and thus condom use); and placing young gay men in situations in which they are particularly vulnerable to infection, to name a few.  (Consider the all-too-common instance of a teen getting kicked out of his home for being gay – then using drugs to cope or having sex for money/shelter.)

During last week’s “What Is the Message?!” forum at Gay Men’s Health Crisis (GMHC), Dr. Blayne Cutler of the DOH emphasized that focus groups with young men who have sex with men and other community members were held as part of the campaign development process.

One group of people with which the Department did not sufficiently consult is young, HIV-positive men who have sex with men.  I recently spoke with a group of such men who told me that if they had seen this spot when they had first been diagnosed, they would have killed themselves. The DOH has some re-thinking to do.

The purpose of this campaign is to combat “HIV complacency” in men who understand that when treated properly, HIV is no longer a “death sentence.”  The DOH is concerned that young men seeing pharmaceutical company’s antiretroviral (ARV) advertisements are coming to believe that HIV is no big deal – and are therefore not worried about the risks of unprotected sex.  Clearly, the DOH understands that messages targeting HIV-positive men also affect HIV-negative men; it would be great if it understood the reverse.

In response to criticisms of the campaign, Dr. Monica Sweeney, Assistant Commissioner for HIV/AIDS Prevention and Control, stated: “We…stand strongly for the strength, dignity, and humanity of people living with HIV. We condemn stigma.”  While these words are commendable, as the DOH knows best, messages are about more than words.  The message the DOH is sending to HIV-positive men is that they are doomed.  And the message it’s sending to the rest of us is that that isn’t the Department’s concern.

The DOH needs to consider the potential effects of its ads on HIV-positive men.  The ads say that “even when you take HIV meds,” you are bound suffer.  And for a young, gay man recently diagnosed with HIV, this message – which many argue misrepresents science – is dangerous.

Suicide among men recently diagnosed with HIV is a serious problem.  But it’s not inevitable.  Rates of suicide among people living with HIV have decreased since the introduction of HAART (highly active antiretroviral therapy), which allows HIV-positive people to manage the virus and lead long, healthy lives.  If recently diagnosed men see other young men effectively managing HIV, they are more likely to feel empowered to take care of their own bodies.  Which leads to the question: What should the message be?

First of all, HIV prevention is about more than messaging.  It’s about reducing poverty, homelessness, unemployment, displacement, discrimination, violence, and stigma.  But to the extent that “the message” can make a difference, the DOH would be advised to follow in the footsteps of GMHC, who put out the “i love my boo” campaign that depicts men of color in couples with the words “We’re about trust, respect and commitment.  Safer sex is one way we show our love.”  This campaign targets the perception that using condoms is either an admission of guilt or an expression of distrust by pairing relatable images with empowering text.  If the DOH wants to target “HIV complacency,” it should sponsor media literacy groups that help HIV-negative men explore the motivation behind pharmaceutical advertisements.  Such groups would help men see that ARV ads are intended to sell, not educate, and that pharmaceutical companies are invested in exaggerating the truth about their products.

Right now, my message is this: Tell the DOH that you care about people living with HIV.  Sign this petition today.

The report examined global funding for 31 neglected diseases including HIV/AIDS, tuberculosis, malaria, pneumonia, diarrhoeal diseases and dengue, and 134 product areas including drugs, vaccines, diagnostics, microbicides and vector control products. Funding for HIV, TB and malaria was maintained or increased, but their piece of the funding pie dropped from 77% in 2007 to 72% in 2009. Diarrhoeal diseases, dengue and kinetoplastid infections increased their share to above 5%, but diseases like leprosy, trachoma and rheumatic fever maintained small shares of global research and development investment.

“More funding is vital and encouraging to see” commented report author Mary Moran, Director of Policy Cures, “but it’s just as important that the funds are spent wisely and well.” Calling into question the big funding dollars for HIV/AIDS, tuberculosis and malaria, Moran described there were “random drivers to the spread of funding [that were] almost never driven by analysis of what’s needed.” Widely available and comprehensive cost benefit analyses for neglected disease reductions have been limited, and there are currently no systems to help funders decide which investments are likely to generate the highest health returns. But Joe Cerrell, Director of The Bill & Melinda Gates Foundation’s European Office, argued that for defining global health priorities, there was “more than randomness; a lot of analysis and more method to the madness.” The predominance of HIV/AIDS, tuberculosis and malaria as leading global health priorities over the last 2 decades has come about, considered Moran, as a result of “a lot of not very carefully thought out strategies.”

US organisations provided close to 70% of all global funding for neglected disease research and development in 2009; the G-FINDER report draws attention to the National Institutes of Health and the Bill & Melinda Gates Foundation as funding leaders. The UK was the second largest donor country, providing 7% the majority of its global funding from the Department for International Development, the Wellcome Trust and the Medical Research Council. The current report was able to provide no information on funding from China, which has a long history of dealing with neglected diseases and is fast becoming the world’s second largest economy.

“The pie has gotten bigger” added Moran, but there has been a “move away from making products and back to basic research.” For David Reddy, CEO of Medicines for Malaria Venture, the report’s findings highlighted funding reductions of 9% to non-profits like MMV, and cause concern. “We help to ensure the money is focused on the area which will deliver the most benefits” argued Reddy, “now is not the time to stop funding.”

With increasing pressure on global financial resources, and a move towards more conservative funding strategies, non-profits which co-ordinate neglected disease product development, and neglected diseases alike, must plan to prove their value for money more strategically than ever.

***
Although he’s supposed to be autographing copies of his mental illness awareness documentary, No Kidding! Me 2!!, at this signing, “Joey Pants” happily signs the Goonies DVDs, VHS tapes, and posters that fans push across the table to him.

“Do you have bipolar disorder?” a teenage girl asks him as he signs her Goonies DVD case.

“I have depression, ADHD, and dyslexia,” the Emmy Award-winning actor says with a smile on his face.

If his admission sounds blunt, consider this: Pantoliano has built an entire charitable organization around the idea that mental illness is something that needs to be talked about. No Kidding, Me Too! (“NKM2”) is a non-profit organization comprised of entertainment industry members united in an effort to educate Americans about the epidemic of mental illness. NKM2’s advisory board includes Hollywood heavyweights such as James Cameron, Harrison Ford, Samuel L. Jackson, and Robert Downey, Jr., some of whom have recorded public service announcements for the organization.

“We use celebrities to shine their light on the issue,” Pantoliano says. He pulls an iPad out of his backpack and pulls up one of the videos on YouTube. “Watch this,” he says, handing it to me. I try to watch the video, but find it hard to concentrate when my only thought is, Cypher is letting me use his iPad!

“The brain is an organ – just like the heart, live and kidneys – and we need to encourage everyone to treat it as such from both a medical and social perspective,” Pantoliano wrote on the organization’s website, NKM2.org. “Why is it that asthma is socially acceptable, but mental disease isn’t? We don’t have to whisper about it anymore.”

He believes that his mother had long suffered from mental illness as well. He only realized she had been sick when he saw a reflection of her in Marcia Gay Harden’s performance as a mentally ill woman in Canvas, a 2005 film that he co-starred in.

The recognition of his mother’s illness gave him the impetus to finally seek help for his own problems. “I was on top of the world,” he says. “I couldn’t understand why I felt so terrible. I thought if I accumulated so much success, the feeling would go away.” Over the years, he says he had trouble controlling his anger; he contemplated suicide.

Pantoliano learned he had been suffering from clinical depression for the last decade, and his psychiatrist put him on an antidepressant cocktail of Lexapro and Wellbutrin. “I feel great now,” he says, adding that he also attends talk therapy sessions twice a month and works out regularly.

Pantoliano is on a mission to share what he’s learned with others. He “came out” on the National Alliance on Mental Illness blog in 2007. Since then, he’s been on a whirlwind tour filming and promoting his documentary, No Kidding! Me 2!!, doing fundraisers, screenings, and interviews to get the word out about NKM2. Along the way, he has somehow found the time to continue acting and finish a memoir about his mental illness (no publication date set).

Is an actor best known for playing criminals in such movies as The Sopranos and The Matrix the best person to advocate for changing the face of mental illness in the United States? After spending an hour with Pantoliano, I can say, “yes.” While he is a beloved actor with a career of hits under his belt, it’s his sincerity and enthusiasm that make him the perfect advocate for mental health issues.

“How are you doing? Are you taking your meds?” Pantoliano asks Ashley Gandolfi, 20, while autographing a DVD copy of No Kidding! Me 2!!

Gandolfi came to Astoria specifically to meet Pantoliano; it’s the first time she had been out of the house in five months, she tells me. “Hopefully just watching his DVD will help open up something. Mental illness runs in my family. Bipolar disorder, depression, dyslexia…basically I have everything,” she says. “It helps when someone in the public eye talks about it. It really helps.”