Since as of September 7, 2017, there are three hurricanes in the Atlantic Basin in the United States (Hurricane Irma, Hurricane Jose, and Hurricane Katia), and it’s fairly certain that Hurricane Irma will affect the southeast coast from Florida to North Carolina, after devastating the Caribbean, and caregiving for our loved ones doesn’t stop just because of weather, here are some tips to help you throughout the crisis (hurricane recovery is long-term). Continue reading
While I have been more acutely aware for quite some time of the areas of misleading and harm that Goldacre spotlights in this book because of my own experience as the medical advocate and primary caregiver for one of my parents and my subsequent extensive research into Big Pharma, Goldacre digs into the details and presents scary and compelling evidence of the total corruption in the industry. Continue reading
Senior citizens, including our loved ones with dementias and Alzheimer’s Disease, are an especially vulnerable part of the human population to the dangerous – and potentially deadly – risks of drug interactions associated with polypharmacy (coexisting multiple prescription medications/supplements/over-the-counter medications use). Continue reading
Big Pharma has more control over how medicine is practiced in the United States than most of us probably realize. The big pharmaceutical companies have deep pockets – filled by American consumers – and big muscles to exert extreme influence over what gets manufactured (patented or generic medications), how much those medications cost, and how often those medications get prescribed.
Big Pharma has also found back channel ways to keep generic forms, which are less costly, of their patented medications off the market longer and to keep the high prices of those patented medications.
As the end of the exclusive right to be the sole manufacturer of patented medication with no competition nears – 12 years in the United States – on popular medications, pharmaceutical companies begin the race to create generic prescription versions of those medications. The cost to make generic prescription drugs is much less, because the formula is already available and there is no investment cost to develop the medication.
Eventually, many generic prescription medications transition to being available over the counter without a prescription.
There is a lot of money being made, no matter how the medications end up being sold, but the most money can be made on patented prescription medications.
Because of that, the pharmaceutical companies can – and do – charge whatever they want for the medications they hold patents for and the consumer often ends up bearing the brunt of the cost as insurance companies refuse to pay the full cost, or as in the case with Medicare Part D, they don’t pay anything at all while senior citizens are in the “donut hole.”
One of the angles that Big Pharma is using to make more money is that they are creating new, patented medications that combine generic and/or over-the-counter (OTC) medications, which if purchased in their separate generic and/or over-the-counter forms wouldn’t cost very much (compared to the patented medication cost).
An example is Horizon Pharma’s patented pain relief medication, Duexis. Duexis combines two older generic forms of Motrin and Pepcid.
The cost for buying the generic forms of Motrin and Pepcid (over-the-counter) separately for a month would probably be less than $50. Duexis, on the other hand, is $1500 for a month’s prescription.
Since there are generic, over-the-counter forms of Motrin and Pepsid (which insurance doesn’t have to pay for), insurance companies, understandably, don’t want to pay for Duexin.
Paradoxically, though, the sales of Duexin are accelerating rapidly.
How and why?
It turns out Horizon Pharma has joined the trend among pharmaceutical companies to partner with a mail-order specialty pharmacy to ostensibly make filling prescriptions easier for everyone.
Doctors are encouraged (they get reimbursed when they prescribe Duexis or any other patented medication) to submit prescriptions directly to the specialty pharmacy instead of sending the patient to the corner drug store with the prescription.
The pharmacy reimburses doctors and mails the medication to the patient and it deals with getting paid by the insurance companies, most of the time very successfully.
The problem for patients who use Duexis – and any other patented medications – is that their insurance costs and deductibles will increase because of the high cost of Duexis (in many parts of the United States, $1500 is in the higher range of a monthly mortgage payment), so the patients end up paying more on the back end.
Another way that pharmaceutical companies are controlling the price and the availability of prescription medications is to pay competitors – known as reverse settlement payments or pay-to-delay deals – to not create generic versions of their patented medications when the company’s 12-year exclusive rights to manufacture the medication ends.
This has become a common practice in the pharmaceutical industry, where everybody winks and turns a blind eye to the practice, and the courts seem to be unable to find anything illegal about the monopolistic effect of this for consumers who have no options but the original patented medication and who end up paying whatever the pharmaceutical company wants to charge for it.
A third way that pharmaceutical companies control what kinds of prescription medications are available as well as the prices is by both generating a consumer demand for the prescription medications (prescription medications rival cars in paid advertising in all form of media) and by giving incentives – monetary and non-monetary – to medical providers to prescribe their medications.
Essentially, this amounts to the pharmaceutical companies creating the market from both sides of the equation for their medications. Not only is this also illegal, but, once again, consumers – you and me – end up carrying the financial brunt of this well-entrenched system in American healthcare.
Most profoundly affected – and what makes the injustice of this burn inside me – by these practices are are also the most vulnerable, healthwise, in our society: the elderly (with and without dementias) and the chronically-ill (diabetes, hypertension, and many neurological and autoimmune diseases).
These two groups of people, then, are often left with the black and white choice of whether to go broke (and lose everything, in some cases) to treat their health problems or to forego treatment altogether to try to stay financially solvent and hang on to what little they have.
This is pure greed, which is why these pharmaceutical companies are in business. They don’t care about the health of anyone. All they care about is a nice, fat bottom line and big payouts to their shareholders and to their executives.
And they have the control, so they can do whatever they want and you and I, either for ourselves or for our loved ones, have to make the choice to dance with them or not.
On top of the devastating neurological, physical, and emotional toll that dementias and Alzheimer’s Disease have on our loved ones, the cost of care – hospital equipment, adaptive devices, supplies, and medications – even when we as caregivers are carrying a fair share of that burden is often financially overwhelming.
Most costly, especially for our loved ones who depend on Medicare (and, hopefully, a Part B supplemental policy and a prescription plan), are the prescription medications used to help manage symptoms and behaviors associated with dementias and Alzheimer’s Disease.
Very few of these medications have generic equivalents, so there is no other option but to buy the Big Pharma patented – and outrageously expensive – medications.
When our loved ones with dementias and Alzheimer’s Disease who are covered by Medicare hit the “donut hole” of coverage, the prescription costs go through the roof because they are billed at full price.
However, there are options available for assistance with paying for these medications all year round.
I’ll summarize the options here:
- Do your homework before filling the prescriptions. Big-box retail stores like WalMart and Sam’s Club (Costco and BJ’s as well) have more affordable prices than stores that are specifically geared around selling medication (CVS, Walgreen’s, etc.). Independent pharmacies may be able to give a better price as well.
- If the PCP prescribes a medication that the insurance plan doesn’t cover, you can appeal for coverage.
- The insurance plan will send a letter of denial.
- Make sure that the PCP provides documentation that the medication is medically necessary.
- Contact your state’s regulator to ask for a free independent medical review.
- Financial assistance may be available.
- NeedyMeds is a national non-profit organization that helps connect people with financial assistance.
- Other non-profits who may be able to help with financial assistance for prescription medication are: Partnership for Prescription Assistance, Patient Services, Inc., and Patient Advocate Foundation’s National Financial Resource Directory.
- Financial assistance – and sometimes free medications – is also available from pharmaceutical companies for medications that are still patented (there are no generic equivalents).
A note from my own experience will save you a lot of time, aggravation, and trouble. Having a PCP or a geriatric psychiatrist deal with the pharmaceutical companies for assistance with patented medications will get the fastest and best results.
The pharmaceutical companies have applications for assistance that the PCP or geriatric psychiatrist will provide. You will have to provide income statements, Medicare expenses already paid, and other expenses related to care. Include everything!
The PCP or geriatric psychiatrist will submit the paperwork and if it is approved, the medication will be sent to them and dispensed from them. The good news is that once you’re in, you don’t have to redo the paperwork again.
Another thing to be aware of is that these programs are not designed just to assist the most economically-disadvantaged members of our society.
The middle-class, which is the largest segment of American society, is feeling the financial squeeze on all fronts more than any other group (and if we are taking prescription medication, we can use some of these resources too for financial assistance to help pay for them). Even though our loved ones with dementia and Alzheimer’s Disease may have pensions, Social Security, and Medicare coverage, the costs of living – and dying – are far outpacing what they have coming in each month.
So this is a potential lifeboat to keep them as financially solvent as possible, while ensuring that they have the medication they need.
In the post “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed what home health care is, when it should and can be used, and what services it provides.
In this post, we will discuss what palliative health care is, when and why it should and can be used, and what services it provides at home for our loved ones with dementias and Alzheimer’s Disease.
Although, as any caregiver can tell you, dementias and Alzheimer’s Disease are always on the radar with our loved ones who have these neurological diseases, there are often other health-related and age-related illnesses that our loved ones are also dealing with, especially if they’re elderly.
Home health care services are available – and should be used – when there is an acute medical condition that needs to be monitored and resolved (if possible) after our loved ones are discharge from a medical facility. Examples of acute medical conditions can include hard-to-manage/uncontrollable blood pressure, diabetes, life-threatening cardiac events, pneumonia, embolisms, strokes, and joint replacements.
As soon as the acute medical condition no longer exists, home health care services are no longer available. However, most home health care agencies have an intermediate health care option between home health care and hospice (end-of-life, with very specific criteria, which we’ll discuss in the next post) care.
That intermediate option is palliative health care at home.
Palliative health care provides home health care services when someone has a serious long-term or terminal illness, but death is not imminent or the prognosis is longer than six months.
Palliative health care provides life-prolonging and curative treatments – just as home health care does – as well as providing pain management and symptomatic relief.
Palliative health care offers the same interdisciplinary team and services that home health care offers: nurses (visits are usually one a week), physical therapists, occupational therapists, speech therapists, home care aides to help with daily activities like bathing, if necessary, and 24/7 nursing/medical support.
Like home health care, this palliative health care team’s manager is the nurse who coordinates and collaborates with the primary care physician and other palliative health care staff.
Palliative health care is an excellent bridge that gives us and our loved ones time to find, consider, and agree on options for care without being rushed into making a decision without having all the facts, discussing and understanding them, and being ready to live (or die) with them.
The goals of palliative health care are different than home health care. With the knowledge that death is the eventual outcome, the emphasis of palliative health care is in the following areas:
- Comfort and relief from physical symptoms like pain, nausea, fluid retention, and shortness of breath
- Communication and coordination of issues, treatments, and needs among doctors (although at this point, I’d personally recommend – and this is what Mom and I agreed to – just working with a primary care physician), other palliative health care staff, our loved ones with dementias and Alzheimer’s Disease and us
- Time to pursue treatment options, if wanted, and time to prepare for death (discussing death, ensuring that all “loose ends” are tied up, meeting personal goals, and saying goodbye)
Since most home health care agencies have a palliative health care program, the transition is easy – either we and our loved ones or the home health care nurse will ask the primary care physician to write an order – and seamless – the same team of nurses and therapists continues throughout the palliative health care phase of care.
Some palliative health care programs have social workers and clergy on staff to help with any community-based services that may be needed in the home and to offer bereavement counseling.
The palliative health care program that Mom was in did not have those services, but we were self-sufficient in terms of a social worker and we had enough spiritual support from our close-knit group of long-time friends within our church family.
Palliative health care should be, at some point, a part of the care we ensure is in place for our loved ones with dementias and Alzheimer’s Disease.
Most people don’t even realize this option is available – and our loved ones do not have to have been receiving home health care services to receive palliative care – and that is one of the reasons I wanted to explain what it is, what is does, and why it’s a crucial part of the team approach to care that we lead for our loved ones.
In the next post, and the last one in this series, we’ll discuss hospice care.
Corticobasal degeneration (CBD) – also known as corticobasal ganglionic degeneration (CBGD) – is a rare (occurs in less than 1% of the population) and progressive form of dementia.
The onset of symptoms typically occurs after the age of 60 and the average duration of the disease from onset of symptoms to death is six years.
Although the underlying cause of CBD is unknown, what is known is that CBD is the result of extensive and severe damage in multiple areas of the brain.
Research into this form of dementia is relatively new (it was discovered in 1968), but the most current research has found that there are similar, but not identical, changes in the brain protein tau to the changes observed in progressive supranuclear palsy and Pick’s Disease.
These areas of the brain where damage is extensive include the cortex (especially in the frontal lobe and parietal lobes) and the deep-brain basal ganglia region of the brain, with the hallmark feature in that area being significant neuron degeneration and the loss of pigment in dopaminergic neurons (signifying a decrease in dopamine production) in the substantia nigra, which controls movement.
Dopamine is a chemical produced by the brain (a neurotransmitter) that plays a leading role in movement, memory, pleasure, cognition, behavior, attention, sleep, and mood.
Often this is the first visible symptom of CBD. It presents as stiff movement, shaky movement, jerky movement, slow movement, and increased lack of balance, increased lack of coordination, and clumsiness. Generally, movement problems affect one side of the body almost exclusively, but as CBD progresses, both sides of the body are affected.
Since these movement disorders can mimic both Parkinson’s Disease and the effects of a deep-brain stroke – one of the classic movement disorders associated with these is ideomotor apraxia (a common example is the inability to initiate walking where the foot seems to be stuck to the floor and can’t be lifted spontaneously to take a step forward) – those must be ruled out as the causes of the movement disorders.
Other early symptoms of CBD can include difficulty controlling the mouth muscles, cognition problems, and behavioral problems. Language and speech difficulties – dysphasia (an impaired ability to understand or use the spoken word) and dysarithia (an impaired ability to clearly articulate the spoken word) – are also early CBD symptoms.
(In my latest book, You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, I devote a whole chapter to a comprehensive and in-depth discussion of the communication problems, including the different types of dysphasia, that occur with dementias and Alzheimer’s Disease, and ways to work with our loved ones to keep the lines of communication open for as long as possible.)
It is not unusual for CBD to be initially diagnosed, if the first symptoms are cognitive impairment and/or behavioral issues, as Alzheimer’s Disease or frontotemporal dementia. Similarly, if movement disorders are the first symptoms, CBD is often initially diagnosed as Parkinson’s Disease.
However, a clear diagnosis of CBD is usually made when both movement disorders and cognitive impairment and/or behavior problems appear simultaneously.
There is no known treatment for CBD. Unlike Parkinson’s Disease where dopamine-enhancing or dopamine-mimicking medications prove to be effective for some of the duration of the disease, these drugs have proven to be ineffective for treating CBD (this is likely because of the very different pathologies in the development and progression of the two diseases).
In the early stages of CBD, speech therapy and physical therapy may help with communication and stiffness and movement. However, as the disease progresses, these will become less effective and, in the end stage, they will be completely ineffective.
As CBD progresses, other symptoms appear and worsen, including:
- Involuntary muscle contractions
- Involuntary eyelid spasms
- Loss of sensory functions
- “Alien hand/limb” syndrome (hand or limb movement that the person isn’t aware of nor has control over)
Because of the increased rigidity and lack of muscle coordination and use as CBD progresses, usually within five years of onset, sufferers will be unable to swallow and will be completely immobile. Even before this, though, one of the potentially-fatal risks associated with CDB is aspiration of food into the lungs because of impaired swallowing and the high likelihood of pneumonia as a result.
While a feeding tube may be considered as an alternative when CBD has progressed to the point where swallowing is significantly affected, it is, in my opinion, inhumane because it only prolongs the suffering from a disease that is ultimately fatal.
This is a quality-of-life choice. I can’t imagine for myself a life prolonged where I am completely immobile and completely dependent on everyone else for everything and I can do nothing for myself.
A feeding tube would be my worst nightmare. And for me, it would be the most cruel thing those in charge of making medical decisions for me could do to me.
Fortunately, I already have all my documents in place to make sure this can’t and won’t happen to me when and if the time comes that the choice needs to be made, because I’ve already made the choices.
So, as an aside, I would strongly urge everyone who reads this to get your wishes formalized and signed and communicated so that you have control over the end game of your life in this area.
Not only is the wise and prudent thing to do, but it eliminates the agony of wondering what to do so often seen in families where the person affected never talked about what he or she wanted and never took the time to answer these questions when he or she could.