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Showing posts with label Healthwise. Show all posts
Showing posts with label Healthwise. Show all posts

Tuesday, June 2, 2015

HealthWise: Hepatitis C and Pain—Part 1, by Lucinda K. Porter, RN

Hepatitis C or no hepatitis C, everyone experiences pain from time to time. However, if you have chronic hepatitis C virus (HCV) infection, you are likely to have pain. The Institute of Medicine (IOM) estimates that around 100 million Americans have pain. Compare this to the 3 million Americans living with HCV, how do you know if HCV or something else is causing your pain? This two-part series will explore hepatitis C and pain.

Hepatitis C is called the “silent killer,” because the liver is a non-complaining organ. Liver cells don’t have nerves, so there can be serious tissue damage, but no pain. However, lack of nerve cells doesn’t mean there can’t be liver pain (hepatalgia or hepatodynia). Located in the right upper part of the abdomen, hepatalgia is usually caused by stretching of the capsule surrounding the liver, as well as by complaints from nearby organs. Liver pain does not mean that hepatitis C is worsening. The discomfort may be dull, sharp, mild, severe, constant or intermittent. For me it felt like my liver was fluttering. The only way I can describe it was it felt like when I was pregnant and the baby moved.

Even if there isn’t discomfort in the area of the liver, HCV may cause pain in other parts of the body. These are known as extrahepatic manifestations, and the complaints most associated with pain other than hepatalgia are:
  • Musculoskeletal (myalgia)
  • Joint pain (arthralgia)
  • Stomach pain 
Since pain is a common symptom of many medical conditions, the first order of business is to get a medical diagnosis to determine the cause of your discomfort. Is HCV the cause, or is there something else? It doesn’t have to be either/or, as some people have more than one cause of pain. If HCV is the cause, the next order of business is to find out if the pain is a direct result of the virus, or has HCV caused a secondary problem, such as cryoglobulinemia or an autoimmune disorder.

In the case of cryoglobulinemia, hepatitis C causes the body to produce proteins called cryoglobulins. Cryoglobulins clump together in the blood when they are cold; this causes joint pain. Various studies have shown that successful HCV treatment also improves cryoglobulinemia. The American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA) HCV Guidelines highly recommend HCV treatment for people with cryoglobulinemia.

Treatment may also help HCV-positive people with autoimmune disorders such as lupus and rheumatoid arthritis. If the pain is primarily from HCV, then eradicating the virus usually eliminates the aches and pains that are caused by the virus.

Pain Medication
Acute pain, meaning that it is short-lived, is the easiest to manage. There is a wide selection of pain medications or analgesics, ranging from over-the-counter (OTC) aspirin to prescription narcotics. These drugs generally work well for acute pain because patients don’t take them for long periods of time, since the problem that caused the pain usually heals. 

That is not to say that there aren’t risks and downsides to taking painkillers—there are, especially from a liver standpoint. This risk increases if the liver is severely damaged by HCV. However, if someone with hepatitis C has a well-functioning liver, most physicians are comfortable prescribing a short-course of narcotics for conditions that warrant it, such as injuries or surgery. The risk to the liver is low, and it’s inhumane and medically unwise to withhold pain relief.

A much bigger problem is chronic pain, or pain that lasts for more than three months (some experts say six months). Chronic pain affects body, mind, and spirit, and it can change your life. The more severe the pain, the greater the transformation. Not the good transformation, like from a caterpillar to a butterfly; more like from a butterfly to an ogre.  

People with hepatitis C who are in pain, are confronted with the issue of finding pain relief that doesn’t further damage the liver. Fortunately, there is a wide selection of medications and pain management tools. Let’s explore pain medication this month; next month I’ll delve into medication-free pain management.

Nonsteroidal Anti-inflammatory Drugs (NSAIDs)
Acetaminophen (Tylenol) is one of the most commonly used non-prescription analgesics. Known as paracetamol in Europe, acetaminophen is great for headaches, fever and mild pain. Technically, acetaminophen is an NSAID, but it’s anti-inflammatory effects are not as good as drugs such as ibuprofen.

cetaminophen is one of the safest drugs there is, even if you have liver disease. It is harmless at low doses. However, acetaminophen can cause acute liver injury and death from acute liver failure at amounts just twice the maximum recommended dose of acetaminophen. The big problem with acetaminophen is that it is added to many medications. Remedies for colds, headaches, pain, sleep, sinus problems, cough and PMS often contain acetaminophen. Lose track of this fact, and you may take toxic amounts. For more information, read Acetaminophen: Safe or Harmless?(HCV Advocate,February 2014)

In the U.S., approximately 50 million people take acetaminophen every week, and more than 25 billion doses are sold yearly. Slightly more than 300 people die annually from it. Nearly all of these are from overdose; half are from intentional overdose (suicide attempts). Acetaminophen hepatotoxicity most commonly arises after a suicide attempt using more than 7.5 grams, but more often at more than 15 grams as a single overdose.

Aspirin is perhaps the most commonly used analgesic and fever-reducing medication in the world. At low daily doses (81 mg), aspirin is used to decrease the risk of stroke, and may prevent a second heart attack. Daily aspirin is no longer recommended to prevent heart disease unless there is a pre-existing condition.

At high doses, aspirin can injure the liver. However, this damage is not from toxicity, such as what may occur with high doses of acetaminophen. The biggest risk with aspirin is a gastrointestinal (GI) bleed. Far more people are injured every year from aspirin use than from acetaminophen. Mortality and morbidity studies are scant, but it appears that there are 10 times more deaths and hospitalizations from NSAID use than from acetaminophen. Complications may occur even at low doses, and the risk increases with age.

Rounding out OTC NSAIDs are drugs such as ibuprofen (Advil, Motrin) and naproxen (Alleve). These drugs are used for mild-to-moderate pain and inflammation. Around 30 million Americans take NSAIDs every year. These drugs rarely cause liver problems, but have other risks, such as injury to the kidneys and GI tract. In addition to OTC NSAIDs, there are many prescription NSAIDs.

Opioids
Opioids are medications related in structure to the natural plant alkaloids found in opium. There are natural and synthetic opioids, and many medications in this category. The most commonly prescribed opioids for pain are codeine, hydrocodone (Vicodin), and oxycodone (Oxycontin). Unlike NSAIDs, opioids have a high potential for dependency and abuse.

According to the CDC, more than 16,000 people in the United States die every year from overdose of prescription painkillers. This is approximately 44 people every day. On their own, opioids rarely injury the liver. However, opioids are sometimes formulated with acetaminophen, and excessive amounts can injure the liver. The FDA has recommended that physicians not use opioid combinations in which the dose of acetaminophen is greater than 325 mg per dose.

Opioid use is making the news these days. Hepatitis C infections rates are increasing at alarming rates in young people, most notably in Kentucky, Tennessee, Virginia and West Virginia. Sharing needles through opioid abuse is fueling this rise.

Another reason that opioids are making the news has to do with how it is prescribed. In some cases, opioids are over-prescribed. Just as bad, is that in some cases opioids are under-prescribed, leaving patients in misery. I am not going to dive in to this debate, but for those looking for well-written information on this, I highly recommend Judy Foreman’s book, “A Nation in Pain.”

What’s Ahead
When it comes to managing pain, there are more choices than just prescription and OTC medications. Next month, I will present information on effective alternatives, such as medical marijuana and drug-free pain management techniques including an effective technique that may surprise you. 

Lucinda K. Porter, RN, is a long-time contributor to the HCV Advocate and author of Free from Hepatitis C and Hepatitis C One Step at a Time. Her blog is www.LucindaPorterRN.com

Resources

http://hcvadvocate.org/news/newsLetter/2015/advocate0615.html#2

Wednesday, January 7, 2015

HealthWise: Denied Hepatitis C Treatment? Here is How to Fight Back, by Lucinda K. Porter, RN

Elizabeth Faraone was diagnosed with chronic hepatitis C virus (HCV) in 2001. She is 53 years old and for the past 20 years, she has been battling chronic fatigue and body aches that are increasing in severity. She couldn’t take interferon because of another chronic condition, so when Harvoni was approved by the FDA in October, she called her gastroenterologist. Elizabeth is on Medicaid. Like many patients, she was denied coverage for treatment. However, Elizabeth didn’t take “no” for an answer, and she was able to get Harvoni.

How did Elizabeth do it? First, she found a doctor who was willing to fight for her. She advises, “If a doctor tells you that your medical insurance won't cover the cost of the medicine and he/she refuses to proceed further, tell your doctor that you can walk him/her through the process of getting the medicine. If he/she still refuses to help, find another doctor.” Elizabeth’s doctor “believes it is a medical necessity for all HCV patients to get treatment with the new safe and effective medicines.”

Elizabeth’s doctor sounds like a saint, but actually, he is following the HCV guidelines recommended by the American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA). The guidelines state, “Successful hepatitis C treatment results in sustained virologic response (SVR), which is tantamount to virologic cure, and as such, is expected to benefit nearly all chronically infected persons. Evidence clearly supports treatment in all HCV-infected persons, except those with limited life expectancy (less than 12 months) due to non–liver-related comorbid conditions.”

The recommendations to treat HCV patients are clear. However, many insurance companies and Medicaid programs are denying HCV treatment except for those who have stage 3 or 4 fibrosis/cirrhosis of the liver. The State of Connecticut’s Medicaid program is only covering cirrhotic patients. I believe they are doing this because they have selectively chosen to follow this recommendation in the HCV guidelines: “Urgent initiation of treatment is recommended for some patients, such as those with advanced fibrosis or compensated cirrhosis.”

Can you imagine if insurers decided to withhold treatment to diabetics and wait until patients were blind or lost a few toes before they’d cover treatment? This is basically what’s happening, because waiting until someone has cirrhosis is too late to prevent cirrhosis. Cirrhosis is a serious disease, and usually not reversible. Even if the person clears HCV, the insurer now has to take care of someone who has cirrhosis.

How did Elizabeth get Harvoni? She used Gilead Sciences’ prescription assistance program, Support Path (855-769-7284 www.mysupportpath.com). If you have any questions about Harvoni or Sovaldi, start with Support Path. At the risk of sounding like an infomercial, here is what Support Path offers:
 
Help with insurance issues. If you want to know if your insurance plan will cover Harvoni or Sovaldi, call Support Path. They will verify your coverage or tell you if you can expect a denial.
 
Help with denials. If your insurance refuses to pay for your treatment, Support Path will help you with the process of trying to secure low-cost medication. They may refer you to a patient assistance program such as the Patient Access Network Foundation www.panfoundation.org, which provides:
  • Assistance with co-payments, often bringing down the cost to $5 a month
  • Tips and tools to help you through treatment
  • Nursing support for patients
There is also help for Canadians with hepatitis C. Gilead’s Momentum Support Program provides support services for patients via their healthcare providers, along with financial assistance for eligible patients who need help paying for out-of-pocket medication costs. For Harvoni or Sovaldi you need a diagnosis, a prescription, and last year's tax assessment to get assistance. For more information, call (855) 447-7977.

Bobby* has lived with chronic hepatitis C virus (HCV) infection for decades. In 2012, he underwent 24 weeks of triple-therapy with Incivek, peginterferon, and ribavirin. He made it through the challenging regimen, enduring debilitating side effects, but was not cured. When the new HCV medication Harvoni was approved, Bobby talked to his doctor about it. He was denied treatment because his managed care system was only treating those with stage 3 or 4 fibrosis (stage 4 is cirrhosis). Bobby fought back and won. He pointed out that his liver biopsy was three years old, and that his platelets were low. Bobby told his doctor that if he was eligible to be treated in 2012, then he should be treated now. His doctor relented.

Not everyone has a success story. Cindy* has lived with hepatitis C for at least 30 years. She was able to manage the symptoms, but two years ago, intense pain and nausea kept Cindy from sleeping. She was diagnosed with cirrhosis. Her doctor prescribed medication for the pain and nausea, but the side effects were too strong. Cindy said, “It was so strong, you could prop me up in a corner and I would drool.” Desperation drove her to self-medicate with a small amount of marijuana. She never dreamed that this choice, which seemed much more sensible than the pain medication, would interfere with her ability to get access to hepatitis C treatment. Cindy’s health insurance is through the state of Pennsylvania. She was denied treatment when marijuana turned up in the toxicology screen.

Cindy is the victim of injustice. Pennsylvania’s Medicaid program does not require drug and alcohol screening for access to medications for other diseases such as anemia, migraines, or type 2 diabetes. Why this one? There are a number of flimsy explanations:
  • HCV is associated with drug use, and it is easy to target drug users (No one in power is going to come to their defense)
  • This is leftover from the interferon days when there were concerns about offering a treatment that had severe neuropsychiatric side effects 
  • Payers are doing anything they can to restrict access so they can save money
Cindy has not fought back, and remains untreated. However, she could call Support Path and see if she could get coverage. If not, she may be forced to decide between marijuana or six months of pain in order to meet the insurance requirements.

Most of the patients who go through this process are able to get their medications. It takes patience. It can be all too easy to get angry and give up, but you end up hurting yourself. Get support, and never give up. Hold on to this truth: You are worth fighting for.  

Note:  This article went to press prior to the anticipated approval of AbbVie's hepatitis C drugs. The intention of this article is to provide tools to overcome obstacles to hepatitis C treatment, not to promote a specific hepatitis C drug. AbbVie’s patient assistance program is https://www.viekira.com/ 1-844-2proCeed

 *Name changed to protect identities 

Additional Resources
Lucinda K. Porter, RN, is a long-time contributor to the HCV Advocate and author of Free from Hepatitis C and Hepatitis C One Step at a Time. Her blog is www.LucindaPorterRN.com

http://hcvadvocate.org/news/newsLetter/2015/advocate0115.html#4