Carrie Ann Lucas, a disability rights activist, died in late February because her health insurer declined to pay for her necessary medication.
When a cold turned into a lung infection in January 2018, Lucas, who was ventilator-dependent, needed antibiotics, but her insurer balked at the cost of the most effective medication available, setting off a cascade of events that left her in ill health for much of 2018.
While a New York Times obituary praised Carrie Ann Lucas for her many achievements as an advocate and activist, the obit did not mention the real cause of her death.
Arizona Gov. Doug Ducey is ordering three state agencies to do a better job protecting Arizona’s most vulnerable residents. The executive order he issued on Wednesday comes one week after the Arizona Developmental Disabilities Planning Council issued a report calling for the state to implement stronger protections for its residents with disabilities.
Some say the governor’s executive order is a good “first step,” but more work is needed to create policies that adequately protect Arizonans with disabilities who reside in long-term care facilities.
One in four Americans is disabled, according to a U.S. Centers for Disease Control and Prevention survey released Thursday “At some point in their lives, most people will either have a disability or know someone who has a one,” Coleen Boyle, director of CDC’s National Center on Birth Defects and Developmental Disabilities, said in a written statement. Read Binghui Huang’s story here.
Former U.S. Treasury economist Ernie Tedeschi wrote a guest column for the New York Times analyzing recent labor force employment data. Tedeschi sourced his information from the Census Bureau’s Current Population Survey and discovered promising signs that people with disabilities are returning to the labor force. Check out Tedeschi’s full report in NYT and readers’ comments about why the trend is occurring.
Living with a disability can have a serious impact on a person’s wellbeing, especially when that disability comes with chronic pain. The challenges of living with daily pain contribute to substance abuse rates that are two to four times higher in the disability community than the general population. While alcohol abuse and illicit drug use contribute to the high rate of substance abuse among people with disabilities, many develop problems related to prescribed narcotic medications.
According to a 2014 report published on Science Daily, more than 40 percent of all Social Security Disability Insurance recipients take opioid pain relievers, and more than 20 percent are chronic users of opioids. These numbers are concerning for a number of reasons. Not only does chronic use of opioids carry a heightened risk of addiction, but researchers are beginning to call into question whether the long-term use of opioids is actually appropriate or effective in the treatment of non-cancer chronic pain.
While some patients have success using long-term opioid therapy to manage pain associated with their disability, others find that as their tolerance to the drugs increases, they require ever-higher doses to reap the same benefit. While tolerance and dependence don’t equate to addiction, they do increase risk. And as the IASP Pain Research Forum points out, higher doses are associated with an increased risk of overdose and death. Even if overdose never enters the picture, death can still result from side effects of opioid use, such as the exacerbation of sleep-disordered breathing leading to cardiovascular death.
Nonetheless, opioids remain as one of the leading treatments for pain, and many people with disabilities rely on opioid pain relievers to keep their daily symptoms manageable. For chronic users, the focus then turns to responsible use to reduce the risk of addiction.
Responsible opioid use begins with doctors: Rather than freely prescribing opioid pain relievers or shunning them outright, doctors must take a balanced approach to these risk-laden drugs. In practical terms, that means not using opioids as a first line of defense against pain, instead directing patients toward alternative remedies like physical therapy and cognitive behavioral therapy, as well as non-opioid pharmacologic therapies, before turning to opioids. When opioids are the appropriate choice, the goal should be to maintain the lowest-effective dose rather than consistently increasing dosages. Physicians must also apply risk assessment tools, screen for contraindicated medications, and carefully monitor patients’ health status after initiating opioid therapy.
Patients, too, have a role to play in managing the risk of long-term opioid use. People who use opioids to treat disability-related pain must be careful to always follow their doctor’s instructions. Steps should be taken to prevent double-dosing and alcohol and illicit drugs should be abstained from while under opioid therapy. Physicians should be informed of all drugs a patient uses, including over-the-counter medications. Opioids should be locked up when not in use and unused medication discarded to prevent unauthorized access by someone other than the prescription holder. Finally, patients should employ nonpharmacologic self-management strategies, such as a healthy diet, adequate sleep, physical activity, and mental health management to improve their overall wellbeing.
While opioids are central to the discussion of addiction and disability, they aren’t the only substance putting the health of people with disabilities at risk. While self-medication with alcohol and illicit drugs can provide temporary relief from the physical and mental pains of disability, it’s a coping mechanism fraught with risks. Drugs and alcohol can interact dangerously with prescribed medications, contribute to poor overall health, and reduce a person’s ability to follow treatment and self-management regimens. Long-term use also contributes to the development of secondary conditions that worsen quality of life, such as depression, organ damage, gastrointestinal problems, and infectious diseases, among others.
Living with a disability is challenging enough without adding a substance abuse disorder into the mix. While advising people with disabilities to avoid alcohol and illicit drugs is relatively straightforward, addiction prevention is complicated when addictive substances are part of a prescribed treatment program. Adequate assessment, monitoring, and cooperation between doctors and patients is essential for preventing opioid use disorders in people with disabilities.
Mary Wilson is the abilities editor for Ability Wellness. She can be reached through AbleWell,org.
The Association of American Medical Colleges (AAMC) published a report today outlining common barriers to medical education faced by med school students with disabilities. The research on this topic was prompted by the AAMC‘s desire to promote diversity among its student, faculty and professional membership, and facilitate the standardization of accommodations. The report suggests that, although more medical school students are self-identifying as having disabilities, a culture of competition still promotes stigma around disability. Philadelphia public radio’s (WHYY) Elana Gordon wrote a short article summarizing the AAMC report and the responses it prompted from disability rights advocates.
The New York Times is reporting on a common practice by disability insurance providers to deny coverage to users of Truvada, a medication also known as pre-exposure prophylaxis (PrEP), that prevents H.I.V. infection. Reporter Donald G. McNeil interviewed healthcare providers, H.I.V. awareness advocates and Truvada users about the medication and why its increasingly popular as an effective strategy for preventing infection. As McNeil points out, the insurance strategy appears to contradict policies towards other preventive medications like birth control and HPV vaccines. Click hereto read McNeil’s full report in NYT.
Hospitals frighten many patients but they can be especially confusing and traumatic for people with dementia. According to a story for the Boston Globe by Felice J. Freyer, hospitals in Massachusetts are making an effort to better accommodate patients with memory loss. Freyer reports that the loud, high-tech hospital environment is disorienting to patients with “fragile minds,” and staff frequently rely on sedatives to calm confused patients. Freyer interviewed family caregivers, Alzheimer’s advocacy groups and hospital executives to learn more about the problem and how hospitals are making improvements.
Immigration and disability rights advocates are criticizing U.S. Border Patrol surveillance of a 10-year-old undocumented immigrant in Texas after she was identified at a checkpoint en route to the hospital for emergency gallbladder surgery. According to an article in The New York Times, the girl, Rosa Maria Hernandez, has cerebral palsy and was brought to the U.S. by her parents as a newborn in hopes of getting better medical treatment. Hernandez is currently being held indefinitely at a federal facility for undocumented minors in San Antonio.
Five state health officials in Maryland are being held in contempt of court for disobeying a court order to provide psychiatric hospital beds to mentally ill criminal defendants. In her 58-page opinion Circuit Court Judge Gale E. Rasin wrote “The actions and omissions of the Department and the respondent officers and agents have been knowing, intentional and voluntary.” Click here to read more on the Washington Post‘s report.