An ongoing dialogue on HIV/AIDS, infectious diseases,
March 25th, 2017
HIV and Hepatitis C Are No Longer the Most Serious Infectious Threats to People Who Inject Drugs
I had dinner with my daughter Mimi the other evening, and was ruminating about how things have changed since I started work as an Infectious Diseases doctor around 25 years ago.
Here’s an excerpt of our chat:
Me: There are way more cases of endocarditis in young people than there used to be, a complication of injecting drugs. People in their 20s and 30s with life-threatening infections, getting admitted to the hospital, needing antibiotics for weeks, sometimes surgery … it’s awful. [I didn’t mean for this to sound like a cautionary speech to my 21-year-old daughter, but reading it now — guilty as charged.]
Mimi: Endocarditis?
Me: Infection of the heart valves. It’s an incredibly serious problem, much more difficult to treat than HIV and HCV. Even with our best antibiotics, some people need major heart surgery — their lives are never the same. And sometimes the infection spreads through the blood to the lungs, spine, brain… Some even die!
Mimi: I’ve never even heard of it. And we never covered it in high school, and we had a ton of drug talks in health classes. It was all HIV and hepatitis. And overdoses, of course.
Me: Trust me, it’s a terrible problem.
Mimi: I bet if I asked 10 of my smartest friends, most would be like, “What?” Hey, I can’t even remember what you called it, and you just told me. Here, let me check something. What’s the infection called again?
Me: Endocarditis.
Mimi [takes out her phone, does some rapid-fire tapping]: Just did a Google search. “Endocarditis and injection drug use” has 179,000 hits, “HIV and injection drug use” has 1.6 million. And most of the endocarditis ones are in medical journals. Only doctors are going to read those.
Me: How do we get the word out?
Mimi: It needs a better name. Something like Zika — everyone can remember that.
Me: Can I steal that line?
Mimi: Provided there’s proper attribution, go right ahead!
For some context, Mimi is a college junior and, while not medical school-bound, is a smart kid. (Of course she is.) Having grown up with two doctor parents, she probably has a better than average fund of medical knowledge for her age.
But the above conversation exposes a major gap in the lay public’s understanding of the risks of injection drug use — one hinted at recently in a piece on the clinical and ethical challenges of heart surgery for people with addiction.
For whatever reason, endocarditis and other invasive bacterial infections are not nearly as feared as HIV and HCV, despite the fact that the former are far more immediately life threatening and way more difficult to treat.
It’s true even among those who have had endocarditis. One woman told me that the most upsetting part of her prolonged admission (complicated by cavitary lung lesions and spine infection at multiple levels) was not the days of fevers, the pain when breathing, the severe back pain from the infection, back pain that still plagues her.
It was when she found out her hepatitis C test came back positive.
Let’s compare:
- Endocarditis due to Staph aureus: Prolonged hospital stay; 6 weeks of intravenous antibiotics; metastatic infection in the lungs and spine; possible need for valve replacement surgery; possible death.
- Hepatitis C: 12 weeks of one pill a day. Even if untreated, unlikely to cause problems for decades.
Of course HIV is incurable, unlike endocarditis — but it too is treatable with 1 or 2 pills a day, treatment that essentially eliminates the chance of getting sick from AIDS. And in the United States, rates of HIV due to injection drug use are way down despite the opiate epidemic, accounting now for only 6% of new cases.
So why do we have this strange paradox? And does endocarditis need a new, more memorable name? Suggestions welcome.
And remember, Zika is taken.
(Second image courtesy of Kelly Beverly, “Infective Endocarditis”.)
60 Responses to “HIV and Hepatitis C Are No Longer the Most Serious Infectious Threats to People Who Inject Drugs”
Paul E. Sax, MD
Contributing Editor
NEJM Journal Watch
Infectious Diseases
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Valveeta?
Valveeter?
When I was a resident I was evaluating “shooter with a fever” (is that term still allowed?) in what was then called the “emergency room” (definitely not allowed!). She had a history of multiple prior bouts of complicated endocarditis, and now appeared to have another. I kept telling her that she probably had an infection on her heart valve, but she seemed surprisingly unconcerned given all she’d been through in the past.
Finally, after several attempts to get her to take the news seriously and agree to hospitalization, she said, “Look doc, I don’t care if I got an infection on my heart valve…long as I don’t got that en-do-car-DI-tis!”
Hilarious!
It’s a public health question – of consent.
What – exactly – are the risks of smoking (many know the highlights – mostly by remembering the box pictures however)
Alcohol use – as directed? Most can only name addiction. Talk to the Europeans about the absolutely proven link between alcohol and cancer (at doses above 1 gl/day).
IV drug use – pretty much restricted to “(accidental) overdose”.
In my universe I’d have EVERY drug available at the corner store – you just have to sign the consent (validated by a passing mark on your written or oral test) that you understand ALL the risks, AND that you have health care coverage/insurance to cover your care should you get any of these statistically known outcomes. . . . .
“Valveeta” is BRILLIANT!
Nah…sounds too much like some kind of cheese.
Vunge? Or valche?
How did rickets get to be called rickets. This needs a rickets-sounding name.
“Tickets” (to Heaven).
Hearthromb (get George Clooney to do a public health ad saying “that ‘m’ makes a real mess…”
I remember during medical school orientation the librarians were giving a lecture on searching for things and used “endocarditis” as an example to search – no one in the room knew what that was…
Candidates:
-Valve gangrene
-Septic heart – septocardia?
(I love Valveeta, but doubt the name would stick given how runny the cheese gets)
– Sax’s disease? (would get traction on this blog, I suspect)
– Heart-eating bacterial infection (I tell patients that the MRSA abscess is a ‘flesh-eating bacteria” infection and that usually freaks them out a bit)
Heart gangrene sounds terrible enough.
Paul,
Faced with the same dilemma over 30 years ago when I used to give STI talks to local high schools, the students came up with “infhart” pronounced “in-fart”.
Valveeta sounds too desirable. I’m an avid Mac and Cheese fan. What about something sounding more ominous like Valvomen
It’s a branding issue. Same thing was true about HCV before we had DAAs. And same thing is still true about TB.
How about “valve decay” ?
D-I-E
Drug induced endocarditis. Memorable even to drug users.
I like it!
As much as I hate it… I think D I E is the best one. I hope whatever name you go with it helps some people. With this unbelievable crisis going on in this country…SOMETHING has to help.
abscessed blood and heart disease
“I-DIE” Injection drug induced endocarditis
Five years ago my son died because of MRSA Endocarditis and he was an IV opiate addict. Codeine in cough syrup as a child, then the dentist at 14 gave him Vicodin. At 18 his job in the utility industry paid $80K a year lots of money went into pills and when he no longer had a job he resorted to heroin. We spent the last 4 years of his life in a fruitless effort to keep him in treatment. He left treatment AMA and refused to go back. I have spent the last 5 years advocating for effective treatment. With the election I’m not sure what will happen to all the work us mothers of dead adult children will lead to but President Obama and ONDCP Michael Bottechelli really tried to get Congress to release emergency funding so more treatment beds were available to the 150 people that die to opiate addiction have a place to go if in that one moment of clarity they choose to surrender to recovery it’s there for them. Thank you for reading and caring.
Sandra, thank you for sharing this, my heart breaks for your loss. MRSA endocarditis has a shockingly high mortality rate, it’s an incredibly serious problem for people with opiate addiction — hence why I wrote this post.
Paul
“Heart Infection” – most people know that the seriousness of “infection” is preceded by the location – vis throat infection compared to brain infection. Notwithstanding that 20% of the population doesn’t know where the heart is or what it does (this does not include the 20% illiteracy rate in North America) I think many would appreciate that “heart infection” “isn’t good”, is easy to understand, is true, and could lead to the question – “so how did they get that?”
And thank you Sandra for sharing that opiate addiction affects those with brains – not only certain people – of IQ, race, SES, gender or so forth. Although 100% curable – they have to take the cure. A “heart breaking” story (sorry for the medical black humor – it helps me cope with this terminal but treatable disorder).
Dear Sandra, I am so sorry for your loss. I can’t imagine the fight you held strong for, for your son.
This Artie hit home as a family member has used IV/D as her choice. She’s walked away from so many times.
Your post hit home how that can change.
My heart is with you. If you ever want to talk about your son- my fb last name is Orambo. That’s all I can offer you for your loss. I’d listen. ❤️
End-itis or Endo. Not too upbeat but gets the point across this is serious
ENDO was my first thought as well. It doesn’t have to be clever–just short and familiar. How many people know ED because of ads for Viagra and Cialis? Since Endo will never have the big money behind it like ED has had, it is up to concerned medical professionals, addiction specialists, journalists, and families to saturate media outlets with this information. We can make Endo as recognizable as HIV, MRSA, Zika….
Sitidracodne
I just went through this. I kept having claudication pain in my right leg & the vascular surgeon kept taking out the blockages but when the 3rd blockage happened in 3 months, they decided to check my heart. I had FUNGAL Endocarditis on my aortic valve. I just went through open heart surgery in September to replace my valve. I spent the entire month of September in the hospital while the Docs tried to figure out treatment. I had iv antibiotics for weeks in hospital & am now on oral voricanazole daily for the rest of my life. The docs tell me there isn’t any case studies on this particular fungal infection so it’s literally day by day treatment. It’s been 7 months since my heart surgery & I’m just starting to feel better. I had another bypass on my right femoral artery in January from the fungus breaking off & traveling down to block my artery in my right leg many times. I never knew that shooting iv heroin would cause anything like this in a million years. I’m 35 years old with 2 kids that need their momma. I stopped doing drugs when all of this started last summer. I’m scared to death it’ll grow back & if it does, I’m a goner. I have vascular, infectious disease, cardiologist & my primary Doc all monitoring me. I am literally at the Doctor twice a week. There’s so much more I could say about what I’ve been through in the past 7 months but you get the idea… I usually did heroin alone but a few years ago when I first started to use a needle to shoot it I shared a few times. It had to have come from one of those times back then from an unclean needle. I didn’t even know I was sick the past few years. I didn’t feel right but I never thought it was from an infection on my heart! I’ve wanted to tell my story for awhile now. This can & does happen. People need to know the risks. The kind of fungus that infected my heart comes from tropical climates & is called lilacus something. How in the world I got that I have no idea. Kinda mind blowing. Just thought I would share my experience.
Heroin is rarely pure and is cut with various things like lactose powder. It is certainly not mixed under sterile conditions. You were likely injecting drugs that were contaminated with fungus, which went straight from your vein to your heart.
On a more serious note (sorry) as infectious disease docs (and thus you likely see most cases of IE from IDU presenting to your institutions) you have a real opportunity to engage patients with opioid use disorder in effective treatment for their addiction. The great work you do will be incomplete if the addiction isn’t addressed, leaving that new or already damaged heart valve open for the next infection. Consultation with an addiction specialist (when available) should be bundled into the care of anyone presenting with IDU related IE.
Heroin Heart/Heroin Heart Failure
Seeing an uptick in staph and MRSA in IV users-any referrals to articles regarding that?
My twenty-nine year old daughter Brittany died as a result of Endocarditis. I found her almost one year ago April 22, 2016. She had been previously hospitalized. She was discharged/released. Unfortunately she still had an infection to her heart. No antibiotics, no follow-up care, no healthcare provider. My daughter was a recovering addict. This needs to be put out there. To raise awareness. So that her death was not in vain. I wouldn’t want this to happen to anyone else. I love and miss my daughter.
Ahem! Doctor… Your visual is showing the wrong valve being infected. Iv staph aureus should infect the tricuspid
Not necessarily. We do mitral and aortic valve replacements daily r/t IV drug induced endocarditis.
Junkie heart; junkie heart disease
Awful, but catchy like a pop song
incidence inImmunocompromised, weak, pregnant women and elderly shoulld have been mentioned..nice conversation though….
Valvox, sounds mean
‘Valverot’ has a certain ring to it imo.
I’ve heard it referred to as “heart infection” to lay persons while on clinical rotations. One of the primary characters in “Orange is the New Black” is a former heroin user who has a scar on her chest from complications from endocarditis in the past. The program briefly elaborates on the subject. So see, they are at least doing some of their part in getting the word out!
Heart core infection?
How about ‘heart fever’ ?
“Docar”
HVD – Heart Valve Disease
or even iHVD for infectious Heart Valve Disease.
Lay-person, here, whose only understanding of Endocarditis is having read this article.
My thoughts are: Non-medical professionals (lay-people) don’t really care about IV drug users. If (they) don’t know someone with this addiction and understand how hard it is to help, it’s easy to judge those who have the addiction issues.
Have any of you doctors seen the posts about the guy who followed trump around, touting his greatness, whose own son died of an opiate OD, and the extreme lack of empathy for this mans loss?
The opiate epidemic of today is like the first years of AID’s awareness- “Only THOSE (‘druggie junky losers’) people (as were the gay men who got the most initial attention for AIDS- ‘those homo fags’) have these issues. GOOD people don’t.”
Doctors need to approach to finding names/initialisms for this. Starting with the actual diagnosis you’d give a patient who has this and has been in medical care for it. “You have Endocarditis, which is the official name for it.”
You need to find an initialism for it, like HIV, HPV, etc.
“IVE” (IV ((enduced)) Endocarditis) very well may fit that as most people aware of the word, “IV”, and what that means.
“IVE” spells it straight out, using “IV” as the reason for the admission of bacteria. Get that said by more doctors and patients, and it’d be easy to remember.
And it’d help to have a street value name. Personally, When I read “Valveeta”, my first thought was a Doctor wrote that suggestion. It’s super cheesy (pun intended). But- use that in broader lingo and there may be a copyright or usage fight from the Velveeta company. Who no doubt would NOT want their product tied into the publics connection of their cheese product, with the issue of IV drug users. It could, however, be used a code at work.
To get attention from the people you wish knew this existed, you need a “street name”.
People say “aitch-I-vee”, for the initialism, “HIV”. Having an acronym, like, “AIDS”, or a street word for Endocarditis would help. ………Dead-heart. Endo-ur-heart. Drug Injected Endocarditis Death (DEAD) Heart Affecting Endocarditis Reduced lifeTime. (HEART)
Think about what one IV user may say to another, when they’re together, or discussing someone who had it, or die, from this. This article implies IV drug user know two risks that come with IV drug use: HIV and the Hep-C one, and don’t know about the (increasing; increasingly seen for it) risk of contracting Endocarditis.
“Did you hear about, ——?”
“No! Wonder where they went.”
“There’s this new thing called, IVE. Ever heard if it?”
“Nope.”
“Dude, you can die from some new heart thing. Jane D had to have a heart surgery for this thing she got. She said it was like bacteria and her heart got infected.”
“John D died because his heart had rabies or something. is that the same thing?”
I’m in NO way trying to be cute in the last bit I wrote, nor demean, the language skills of anyone who has had IV drug use. Not even sure how this would be addressed by someone who has had an infection in their heart- I read the heartbreaking comments, from the Mom, who lost her son, the Lady who had a form of Endocarditis, and the Mom-Lady who was brave enough to admit she’d used IV drugs, and is dealing with this.
The question was asked at the end of this art ikr what could be used for a way to start getting Endocarditis into the public realm of knowledge, and what words to use to define this little understood medical issue.
I am a lay-person, here. But I’m a lay-person who (knows someone close to me) who, in the past, has made the choice (and then this choice got beyond her, “I’m ok. I’m in charge of this; I’m no junky!”, choice, made her), to use her drugs of choice, via IV.
Trying to help. I have the utmost respect for doctors, having had Crohn’s for over four decades. Which has lent my life to hours of being around, treated and mis-treated, by medical professionals. i know the hard work it takes to get a medical degree. To the point hose hours learning stuff leads to a stunted personal life and then once into (your) precession, has meant a lot of you are so smart you miss a long list of why’s; in this case, why would an IV drug user who had Endocarditis (as per this article) lament over the fact her positive result Hep-C (would that be considered a flare?) was her biggest issue through her hospitalization for her heart issues.
I do hope my comment is something I will now successfully post to the comment thread. I’m not tech-savvy.
If you want to reach out to me, after this. The best way is to send a FB messenger. I’m under Linda Orambo; please tell me it’s (you) from (this article)
editis, heart rot. valve blight,
Well, you could call ’em heart boogers. Plain & easy.
INFECTIVE ENDOCARDITIS, the name by itself buzz in the ear.
The way to go is to make people familiar with, just like Hepatitis!
Very good article concerning the dangers of Endocarditis. My hometown in Germany provides clean syringes for addicts. We even have a place where people can apply iv drugs hidden from the public. I think it’s important to treat severe drug addiction as a disease, not as a crime. Nevertheless would I call it
X – germs: Valverine 😉
I would suggest the therm VALFECTION
*term
Three years ago I was on my way to the grocery store when I felt a crushing pain in my chest. I thought it was a heart attack but it turned out I had infective endocarditis. I had to have open heart surgery, mitral and aortic valve replaced with tissue vales and tricuspid repaired. I have never injected drugs. My doctors believed my infection came from a dental visit, where bacteria leaked into my blood stream. The vegetation on my valves was out of control and it took about a week to determine what antibiotic to use. Scary time.
The correlation between gum disease and heart disease has been identified. Could it be that IV drug users suffer from poor dental and oral health; that infection is introduced into the bloodstream from the mouth rather than a pierced vein? Maybe the question is what percentage of patients with endocarditis were IV drug users; vs what percentage of IV drug users contract endocarditis?
I’m wondering if the HACEK are responsible for post IV drug use endocarditis? Are they commonly found in skin flora? Thanks. And I admire the name D.I.E.- drug induced endocarditis
Is it only IV heroin users that get it? If not then ” junkie heart ” or “heroin heart” would not be effective . I doubt it would be used. The word junkie is horrible in itself. I like endoitis or cardoitis , cardi end
Cardi infection I guess it could valvi itis or just plain heart infection or heartitis might endoheart
We are seeing a big uptick in endocarditis specifically in 20-something people in the last year or so – including a number of pregnant women with various disastrous outcomes. I’d love to see some epidemiology on this. And, it tells me we need to figure out how to get drug users connected with Nexplanon or other longterm birth control (if they desire it, of course.) Might be tough in the current political environment, but we can work locally with our drug treatment providers, FQHA’s, etc.??
Taking a clue from male enhancement treatments for Low T.
Endo C
ENDOC
or
END-DOC
Short for endocarditis. End of your primary care doc treating you.
Although I am an ID physician I feel it is my duty to address their addiction. Nothing fancy – just right to the point (Why did you start? How long have you been using? Have you ever had a period where you were not using and how did you do it? What is your plan for recovery now?). I then give them my brief talk on acquiring HIV, HBV, HCV, but then tell them the real “killer” is the bacterial infection with its multiple complications. Some of them get it, others don’t and leave AMA before completion of their therapy or return with yet another infection.
My Questions is why are the Hepatitis c treatment drugs Sofosbuvir giving our community heart condition?
Does this treatment has toxins that effect the heart? Many people I know have aneurism on the heart after treatment and heart attacks and some need pace makers. Drs think this treatment safe but it’s not.