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Author Topic: Count whatever blessings you have  (Read 2982 times)

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Offline Life

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Count whatever blessings you have
« on: June 27, 2007, 12:03:14 AM »
Where in the world is Dr. Ben?  I feel very fortunate to have the treatment and care that I have when so many others who are just as deserving do not.  Dr. Ben will sometimes write about his travels and here is the latest.  I thought i would share this...  Trying to understand why so many have so little in the way of help when it comes to aids just leaves me speachless everytime...

Eric

---------------------------------------------------------
26 Jun 07
Kriviy Rih, Ukraine

“I can’t give them what we don’t have”

About 200 km to the southwest of Dnepropetrovsk is Kriviy Riy, an industrial city of ~650,000 persons .  Kriviy Rih also has giant mine tailings and an Apocalyptic sulfurous cloud rising from dozens of smokestacks that obscures not only Ukraine’s blue sky but hides a burgeoning HIV/AIDS catastrophe.

About 10300 known (5700 registered) cases of HIV, 1.6% prevalence and growing fast.  With under-reporting, the prevalence might be as high as 3 percent (20,000 cases in a city the size of Denver).  Thirteen hundred pediatric cases since 1996, with 443 actively registered children today. Limited PMCTC has reduced vertical transmission from 25 to about 10%.   

With the exception of the children, most cases present with late stage disease, but a surprising low level of tuberculosis has been diagnosed (37%) compared with other cites in the country. 

There is woeful difficulty to obtain basic diagnostic labs in the AIDS center- not even a simple complete blood count (CBC)- meaning that patients often have to travel tens of kilometers to get to lab testing. CD4 counts have been performed in only 15% of all patients, viral load testing requires a ~300 km round trip microbus ride and a day away from work or family to the Oblast center in Dnepropetrovsk. 

ART has been in the city of about 2.5 years;  135 adults and 50 children are on chronic antiretroviral therapy, with excellent initial results— a reported 150 cell increase in most patients within 6 months. Mortality among these individuals should approach 50% in a year; at first glance ART does seem to work.  There have only been 20 deaths among the 185 patients who have started.  While there’s an immediate need to double the number of patients on chronic ART, the medical director of the city AIDS center said, “I can’t give them what we don’t have”. There’s also not much available but first line medications. 

Nadia, a generally well appearing 30 year-old woman has developed intolerance of AZT and allergic to efavirenz.  In December.  Despite a CD4 count of 57 and active clinical stage 4 (out of 4) disease, she hasn’t been offered anything else for ART, since no other 3rd agents are available for her.  No nevirapine, no nelfinavir, no lopinavir.  Not even cotrimoxazole (aka Bactrim).

Preventive therapy with cotrimoxazole is available only `“just a little bit”, code meaning that most eligible patients don’t receive even basic primary prevention for life threatening opportunistic infections, Pneumocystis or toxoplasmosis. In addition to Nadia we met two consecutive patients whose CD4 count counts are 42 and 22, both with symptomatic AIDS, but there’s no cotrimoxazole for them either.  It’s difficult to convince inexperienced doctors that even this simple intervention can save lives or prolong health until a time when time and healthcare policy catch up to their patients.

There is a sense of dedication among the HIV care providers, who stay much later than the scheduled 2 hour meeting to discuss cases and different treatment strategies.  There’s difficulty in attracting doctors to become infection and AIDS specialists; most doctors are senior; only one well-dressed young female tuberculosis specialist breaks the trend.  Doctors are justifiably frustrated and we need to be careful in not sounding critical of shortages that are not of their cause, but under which they and their patients suffer.  Many are hungry for advice, both theoretical and practical-I suggest that CD4 count testing could add to the recognition of ART-eligible patients prior to the onset of end-stage symptoms or disseminated tuberculosis, but it was awkwardly pointed out that this little changes things, since additional antiretroviral medications are available currently.  Not much is expected from the federal health ministry in the near future; there’s little appreciation that training or international attention will change things.  With the difference between life and death out of reach and a matter of a few medicines, it’s a frustrating situation to not be able to offer more than advice and my promise to help.

Offline aztecan

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  • 29 years positive, 56 years a pain in the butt
Re: Count whatever blessings you have
« Reply #1 on: June 27, 2007, 01:05:02 AM »
(((Sigh)))

Between hearing this and the discussions with our Al, who is from Serbia, I am certainly much luckier than many others.

Sometimes we forget the positive things we have for which to be thankful.

HUGS,

Mark
« Last Edit: June 27, 2007, 05:43:52 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline ndrew

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Re: Count whatever blessings you have
« Reply #2 on: June 27, 2007, 01:09:10 AM »
http://www.usa.gov/Contact/Elected.shtml

Thanks for sharing this with us.  I think we sometimes feel helpless amidst the suffering of others.  The responsibility weighs heavy on all of us, especially when we live in places where we have more than enough to give and change...

Drew

Offline woodshere

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Re: Count whatever blessings you have
« Reply #3 on: June 27, 2007, 08:31:50 AM »
My mom has told me from the time I was a child that even though I might have it bad, there are those who have it far worse than I do.  It doesn't make my problems go away, but does cause me to look at what I do have and bring things in perspective.  I have been blessed compared to those in other countries.  But I am also lucky and grateful for the care I receive here in the states compared to others here who seek medical care for whatever their problem might be.

John Edwards talks about the gap between rich and poor.  I am by no means rich and agree with his assessment.  But, I think a more frightening gap is the one between the insured and the uninsured.  Fortunately my low paying, crappy job does provide good insurance. 

I do believe there is a silver lining in the clouds sometimes we just have to look for it,
Woods
"Let us give pubicity to HV/AIDS and not hide it..." "One of the things destroying people with AIDS is the stigma we attach to it."   Nelson Mandela

Offline cokaine

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Re: Count whatever blessings you have
« Reply #4 on: June 27, 2007, 12:46:41 PM »
It makes me want to cry.

Online Dachshund

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Re: Count whatever blessings you have
« Reply #5 on: June 27, 2007, 01:21:35 PM »
I count no blessings today. I burn with white hot fury. I just found out my friend Chuck is in the hospital on life support dying from Histoplasmosis. Diagnosed with a sinus infection a month ago...waiting too long to see a doctor because he has no health insurance and now about to die from something that could have been treated. I live in a city with an infant mortality rate as high as any third world country. Fuck my blessings.

Offline cokaine

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Re: Count whatever blessings you have
« Reply #6 on: June 27, 2007, 01:36:43 PM »
Dachshund

I am sorry to hear about your friend and I TOTALLY agree with you about our sad healthcare programs in this country. It is an embarrasment that a country so powerful as the US is so weak at proving us with healthcare but I can tell you have not lived for very long in a 3rd world country. I have seen CRUEL situations in hospitals in a REAL third world country where they will literally stop you from entering the emergency room if you do not give them a large sum of money in CASH upfront. Where the doctor ask you, if you want care of a peasant or of a human being. Or where a vetenerian is your primary doctor. Don't compare us with a thrid world country my friend.

Online Dachshund

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Re: Count whatever blessings you have
« Reply #7 on: June 27, 2007, 01:51:30 PM »
Look I am going to be polite but don't tell me what to compare or contrast. You know absolutely nothing about me, where I have lived or any of my life experiences. You miss my point completely...I don't care if you're not treated by a vet in Suriname or a brain surgeon in Southhampton...no treatment is no treatment and dead is dead. I'll count my blessings when there is a reason for them to be counted.

AD
 

Offline Life

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Re: Count whatever blessings you have
« Reply #8 on: June 27, 2007, 10:40:14 PM »
Dox I presume we will all wind up like Chuck in the long run if things stay the way they are headed..  I am sorry about your friend...

Offline DanielMark

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Re: Count whatever blessings you have
« Reply #9 on: June 28, 2007, 05:45:12 AM »
It doesn't make my problems go away, but does cause me to look at what I do have and bring things in perspective.

And therein lies the difference between really living and just surviving, Woods. It definitely makes the difference between struggling and having some sort of inner peace, for me.

Mind you, there are days I still gripe and moan, because life just blows. LOL But overall keeping things in perspective has served me well and has kept me going forward instead of caving into this nasty bugger of a virus.

So to Eric’s topic I would respond that after reading some of the problems others face, I know I am blessed to live in a country where the health care of our citizens is still a priority.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Life

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Re: Count whatever blessings you have
« Reply #10 on: June 28, 2007, 08:53:37 PM »
Final installment........  Dr. Ben...

28 Jun 07
Over the North Atlantic

Hi all,  several flights and 22 hours into travel, I’m in the luxurious lap of a business class seat in a new Lufthansa jumbo jet heading home to Denver, a zillion virtual miles from the Nikopol metal alloy factory employee hotel the night before last. 

Here are my last segments of my trip’s diary. 

There’s nothing like these trips to make one appreciate how fortunate we are in the West for just when you think you know something about somewhere, you learn you know little.  This week I learned (again) that every day, healthcare crises are impact lives of real live people, in places that we may never know or hear of; this reinforces to me the simple notion that healthcare should be a human right.

I hope this is an interesting read, and as always welcome your comments. 

Best of health and peace to you,
Ben

                                                                                                       

27 Jun 07  Nikopol, Ukraine
Choosing between HIV medications and food

Valeri is a skinny 46 year-old man with HIV and a recent CD4 count of 96.  He’s been on antiretroviral medications for about 2 months.  Once a month, he travels the 150 km to the Olbast AIDS center in Dnepropetrovsk.  There he gets his refills of antiretroviral medications and any required lab tests, such as CD4 count or viral load analyses.  Valeri’s disabled, meaning that he gets by on a monthly pension of about 80 Ukrainian Hrivna ($16 USD).  I do the currency conversion and ask him again.  Yes, 80 Hrivna. 

It takes Valeri about 35-50 Hrivna to get to the Olbast center.  As a result, he chooses between getting his HIV medications and buying food.  He could probably eat more if he could actually pick up his medications at the city AIDS center in Nikopol, where he lives.  He wasn’t even offered life-saving cotrimoxazole (Biseptal) prophylaxis that he needs and all international treatment guidelines agree on.  The Oblast center never offered the cotrimoxazole, even though it’s said that they are required by Ukrainian statute.  Even if they had suggested it, the 10 Hrivna per month it would take to purchase is out of reach.

Valeri is convinced by adverts and his doctors to spend scare Hrivna on “hepatoprotector”, an unproven nutritional supplement.  Most other HIV patients also take hepatoprotector. Kiev HIV specialist and my colleague, Dr. Oksana Holub calls the product’s claims unsupported, but a “Ukrainian national sport”.

Nikopol is a poor city, another Ukrainian industrial center on the banks of the huge man-made inland sea called Kakhovska .  Many old Ladas, but no Porsches or BMWs here.  A onshore wind blows whitecaps and waves so bright algae-green that they must have arisen in a Dr. Seuss book.  I wonder quietly if the green comes from dissolved copper.  Fortunately, the onshore wind also blows the toxic plume from the alloy plants away from the city (at least today).  It’s hot, muggy and dusty.  Our hotel is just plain awful,  the best part of it (as they say) is checking out.  The morning brings scores of citizens lining the sidewalks, hawking just about anything.   Across the street is the ad hoc market for used heating and plumbing parts.

Nikopol’s HIV care occurs in one wing of the polyclinic, a non-descript building lit only by the windows at the ends of long corridors.  Kerchiefed babushkas populate the wooden benches in the waiting queues and trundle slowly up the stairwells.  We meet with workers from the local AIDS service organization, Open Door.  The organization provides patient education, harm reduction and helps run hospice services.  They say that “many are dying”, simply because they cannot afford to get to the Olbast AIDS center, where a requisite trip stay precedes the initiation of antiretroviral medications or even a simple CD4 count test.  There’s a fractured HIV care system in this city, with no clear HIV inpatient system; a limited supply of antiretrovirals means that so patients are only given vague counsel.  Slava, a man diagnosed with HIV in 2003 had no idea; “I’ve heard there’s some type of therapy” but “I have no money to get to the Oblast center”.  The Open Door  group estimates that there of their 800 clients, half have a “burning need” to start medications, very few have ever had a CD4 count test done to predict their risk of life-threatening complication.  Most have never heard of cotrimoxazole prophylaxis.  Nor have the pharmacies.

We perform a bit of guerrilla relief work.  With the help of my colleagues, we scour the cities artekas (pharmacies) and buy up all of the Biseptal (Cotrimoxazole).  We leave behind enough for about 8 or 10 patient-years.  It’s a start.  Maybe we’ll be able to prevent a case or two of pneumocystis or Toxoplasmosis while government agencies catch up to international treatment guidelines.  In the rush to scale up access to antiretrovirals, in the Global Funds’ 3 x 5 plan, the simple things have been left behind.  For those who have drug reactions to the Biseptal, no second-choice prophylaxis, (atovaquone or dapsone) is available.

Nikopol has a population of about 140,000 and fortunate to have a relatively lower rate of tuberculosis among it’s AIDS patients.  Of 537 patients officially registered with government services, 139 have tuberculosis.  The head HIV doctor, Olha Lisinchenko is a polite 40-something who’s apologetic for having only 3 months of HIV experience.  Following a 5 day introductory course in April, she’s in singularly responsible for charge of HIV treatment and prevention.  A grand total of 7 patients in Nikopol receive antiretrovirals; we met 4 of them.

One of them is Yulia.  She is living proof that death need not be the only prognosis Dnepropetrovsk oblast’s HIV patients.  A former injection drug user diagnosed  HIV+ in 1996, in 2004 she was one of the first in the olbast started on antiretrovirals (d4T,3TC and efavirenz).  In this time, she has gone from near-terminal AIDS to having back her health.  Yulia’s CD4 count has gone from 56 to nearly 800.  While she says that her “government doesn’t [care] about HIV patients and thinks of us only as corpses”, she’s “really grateful for all those who have supplied HIV drugs”.


28 Jun 07
Postscript: Want no evil, report no evil

Dnepropetrovsk oblast is symbolic of Ukraine’s HIV epidemic, one essentially unknown to the western world.  Large rural agricultural fields of corn and deep blue skies echo the colors of the Ukrainian flag.  Equally large industrial complexes are both relics of Soviet times’ massive mobilization and of today’s wild West of post-Soviet investment in anything but healthcare.  Air quality at these metal factories and mines are unbelievably bad.  Epidemic proportions in the cities with severe HIV stigma driving under reporting of the severity-  2% overall prevalence and growing.

There remains a highly hierarchical medical infrastructure with central organization and supply from the Oblast center.  With shortages in supplies, diagnostics and medications, the Oblast center is first- and sometimes last in the supply line.  The farther one gets from the center, the greater the difficulty in communication and coordination of care between healthcare providers.  The reliance on shards of paper to communicate medical results and the lack of computer systems adds to this difficulty.

It’s clear to me that scale up of access to antiretrovirals is beginning and some patients have benefited from dramatic reversals in fortune and prognosis.  But antiretrovirals will not arrive in the region’s outlying cities in time to save the lives of many of the most critically ill.  Delays and limited resources also means unnecessary disease progression among those patients formally eligible for medications, but either not as severely ill or asymptomatic with low CD4 counts.  Because it takes fewer resources to preserve the health of healthier patients, this delay will add to the ranks of the critical and increase the costs (both human and economic) of the epidemic.  When outside centers request additional medications, numerical “targets” for the size and growth of the epidemic appear to choke distribution; a “want no evil, report no evil” policy. Having too close of an administrative link between HIV prevention and HIV treatment means that those responsible for preventing the epidemic can validate their “success” by limiting the number of recently diagnosed, or those on treatment.

It’s also clear that the expertise and experience at Kiev’s Lavra clinic continues to grow.  Watching Dr. Holub moderate discussions with her Ukrainian colleagues, using strategic syntax that I had taught a year before in Kiev, I saw proof of the training of trainers concepts.  Within Lavra’s staff exists the nucleus for self-sustaining domestic training and a bright point of light for hope for Ukraine’s HIV patients who live in regions so lacking.

The rush to scale up antiretrovirals has clearly come at the expense of other aspects of HIV care; PCP prophylaxis is essentially non-existent in all of the oblast’s AIDS care centers, diagnostic capability is lacking for most of the serious life-threatening opportunistic infections.  Second line therapies for prevention or treatment are non-existent.  There’s really only one place where requisite HIV lab tests are performed and patients must travel to the oblast center in Dnepropetrovsk in order to have what is ordinarily simple phlebotomy.  Or they simply go without (and without antiretroviral medications).

In the short term, several solutions can be had.  Increasing awareness of PCP and toxoplasma prophylaxis with cotrimoxazole must be an immediate regional and national priority.  It makes little sense to invest in antiretrovirals and sophisticated diagnostic analysis when disease prophylaxis is neglected.  A few hrivna invested in getting patients on cotrimoxazole can save thousands in diagnosis and treatment of pneumonia and encephalitis.

Simplifying patient’s access to laboratory testing and antiretroviral refills will likely increase the number of eligible patients and the proportion of patients willing to initiate care.  A simple system of performing phlebotomy and specimen processing at the local centers and scheduled courier to the Oblast diagnostic lab would be of significant benefit to patients and decompress work load at the Oblast center.  The same courier system could also serve to assist in transportation of patients in need.

Stable patients initiating antiretrovirals need not be hospitalized for weeks as is the standard in the former Soviet system.  Increasing the number of patients initiating ART will place huge burdens on the already strained inpatient system.  As is the case in many countries, most HIV patients would prefer and safely initiate ART at their local care centers.

Domestic and international pressure must be exerted to the federal and oblast policy to increase the breath and scope of care as well as to simplify the lives of those persons who have a chance of restored health.  It would serve no good to restore health only to have lives encumbered by unnecessary days spent traveling to receive care.

Offline RapidRod

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Re: Count whatever blessings you have
« Reply #11 on: June 28, 2007, 09:13:31 PM »
I count no blessings today. I burn with white hot fury. I just found out my friend Chuck is in the hospital on life support dying from Histoplasmosis. Diagnosed with a sinus infection a month ago...waiting too long to see a doctor because he has no health insurance and now about to die from something that could have been treated. I live in a city with an infant mortality rate as high as any third world country. Fuck my blessings.

Hal, just because one has no health insurance is no reason to not to seek medical attention. Histo in HIV patients can be treated, but it can't be cured. I'm living with disseminating histo, which has a morbidity rate of 90%. I had no health insurance when I was hospitalized, but had been to the doctor several times before and was first admitted to the hospital with possible TB, which I didn't have. Transferred 13 days later to Univ. Hospital Medical Center in Columbus in critical condition and was diagnosed within an hour of arrival with histo. I wasn't expected to live out the night, let alone as long as I have. My ID doctor has always said that it was a higher power than himself and medicine that I survived. I don't doubt his word one moment. I wish nothing but the best for your friend.

Online Dachshund

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Re: Count whatever blessings you have
« Reply #12 on: June 28, 2007, 10:29:23 PM »
Chuck did go to the doctor and they kept telling him it was just severe sinusitis. Last Friday he went to the emergency room was admitted to ICU and is now in a coma. I hope and pray he will be as lucky as you Rod. :'(

Offline RapidRod

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Re: Count whatever blessings you have
« Reply #13 on: June 29, 2007, 05:19:15 AM »
Hal, histo is one of those diseases that can be over looked easily by a doctor or a hospital. Let me know how Chuck is doing when you find out

Offline BT65

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Re: Count whatever blessings you have
« Reply #14 on: June 29, 2007, 10:02:14 AM »
So sorry about your friend, Hal.  Damn the botched up diagnosis!
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline NycJoe

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Re: Count whatever blessings you have
« Reply #15 on: June 29, 2007, 11:01:53 AM »
I count my blessings each and every day no matter how bad things seem or get sometimes.  It's very easy to focus on the bad things but if you dont appreciate the good things..it limits yourself.  I go by my mothers motto..appreciate what you have..things could always be worse.  I live by that statement even on bad days.

Offline bear60

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Re: Count whatever blessings you have
« Reply #16 on: June 29, 2007, 11:05:34 AM »
Joe
You know what my mother used to say......"If you cant say something nice, dont say anything at all!"  That should be a lesson here on AIDSMEDS for a few posters of doom and gloom.
My mother also used to say...."Stop frowning...your face will start looking that way all the time,  ...now smiiiiiilllllle.
Poz Bear Type in Philadelphia

Offline water duck

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Re: Count whatever blessings you have
« Reply #17 on: June 29, 2007, 06:36:50 PM »
...............when life don't smile at you.......................

...............SMILE  at life !!!

 


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