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Welcome to another issue of Butterfly News - the lupus newsletter.
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This month Shar has written another article for us.
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(Dear Readers, this is an article in three parts, due to fast breaking
news)
HRT, Old Sol & Uncle Sam - A Triple Whammy?
Part 1
Hormone replacement therapy (HRT), whether estrogen only (ERT),
or estrogen-progestin combined (EPRT), was once viewed as high hope
for women in menopause and possibly for those with AI illnesses
such as lupus. Now, the future of current treatment is doubtful,
with both and especially HRT considered high risk for most of us.
In the U.S., the National Heart, Lung and Blood Institute of the
National Institutes of Health, along with the Women's Health Initiative,
has been engaged in a clinical HRT study of 16,608 healthy, menopausal
women, from the ages of 50 to 79 years and in the observation of
women clients at 40 American clinics.
This study of the long-term effects of combined estrogen/progestin
use had been intended to run for 8 years but was pulled to an abrupt
halt after just over 5, when tests revealed an increased risk of
breast cancer, coronary heart disease, pulmonary embolism and stroke.
There is also heightened risk of uterine cancer, gallbladder disease
and blood clots. Visit http://www.ama-assn.org/sci- pubs/amnews/pick_02/hlsb0729.htm#rbar_add
to read the AMA report.
HRT was never advisable for women who've had fibrocystic breast
disease, uterine fibroids, liver disease, breast or uterine cancer
or endometriosis. Those who live with migraine headaches, have diabetes
with vascular disease, epilepsy, high blood pressure, a history
of blood clotting, or have "severe" lupus were considered equally
ineligible for HRT all along.
Lupus can increase our risk of complications including heart attack,
bone loss, and injuries like hip fractures, odds that can rise higher
when we take steriods. It was thought that HRT might be just what
the doctor ordered but using HRT in SLE could turn out to be like
standing under the apple when William Tell lets his arrows fly.
Each woman's risk factors will vary but in healthy women, HRT's
side effects can include severe headaches, nausea and gastrointestinal
irritation, vaginal bleeding and tender, swollen breasts, extras
that can already come as a free bonus with lupus.
As for long term estrogen replacement therapy (ERT), a 20 year
clinical study of 44,241 women by the National Cancer Institute
or NCI, found that postmenopausal women, with or without hysterectomies,
were at greater risk of contracting ovarian cancer than women not
using HRT. Though short term use isn't considered dangerous, after
329 study participants were diagnosed with ovarian cancer, it was
determined that the risk rises a significant 7% during each year
of use. Short and long term usage will now be subjected to more
scrutiny before the next round of announcements are reported.
These study results needn't cause overall panic but they can be
excellent food for thought. In the wake of this report, most doctors
are still as unsure as the rest of us, the results are now being
pored over by others and we can expect a torrent of debate over
how this will affect the possibility of future hormonal therapy.
The American College of Obstetricians and Gynecologists (ACOG) has
already created a task force to investigate these findings further.
Approximately 14 million American women are said to be receiving
some hormonal treatment, with about 6 million women on HRT, for
relief of their menopausal symptoms. If you've been getting estrogen
alone or in combination with progestin, it's important for you to
have a detailed face to face discussion with your doctor about any
potential risk factors that may or may not apply to you.
If you've been on this regimen for a prolonged length of time
and are experiencing any problems or just want to quit, the general
recommendation is to taper off use for one month to as long as three
(depending on your individual circumstances) to minimize surging
hot flashes. You should, of course, be thoroughly and regularly
monitored throughout therapy and after. Well informed and working
together well with your doctor, you'll be better able to decide
for yourself what is best for you.
There are alternatives to hormone therapy such as those described
at Web MD http://cssvc.health.webmd.compuserve.com/content/article/1728.54974
and Well Span Health (scroll down) http://www.gettysburghosp.org/breakingnews/
which are worth investigating before deciding for yourself. ACOG
has a May 2001 bulletin posted at http://www.acog.org/from_home/publications/press_releases/nr05-31-
01.htm with guidelines for herbal use. Butterfly News issues of
October 2001, November 2001 and February 2002, archived at http://www.uklupus.co.uk/bnews.html
discuss the uses of soy, herbs, other alternatives and a lupus healthy
diet.
Part 2
Nearly every home has at least one junk drawer but we're likely
to have one in every room. With our hypersensitive skin, we're liable
to toss in pots, tubs, tubes and bottles of cosmetics, sunblocks,
hair treatments, hand and body lotions, eye drops and more failed
but once bright hopes. Maybe we should call those bins "money pits"
since they surely suck in plenty of it. Most of the products we've
bought because of glowing ads, doctors' recommendations and suggestions
from family or friends, along with our own little discoveries, wind
up rotting into expensive gunk, deep in the bottom of a drawer.
We soon learn that just because a product is described as "hypoallergenic",
"for sensitive skin" or "dermatologist tested", doesn't mean it
won't cause problems for us. We're better off shopping where there
are demonstration bottles or "demos" on the counter or, at the least,
where we can make trial size purchases first. It's also a good idea
to confirm the stores' return policies so we need not be stuck with
every single dud.
It's economical for us to buy small bottles or tubes of sunblocks
or skin creams since lupus so readily adapts to chemicals and Ol'
Wolfie quickly maneuvers to out-fox them. Because of the adaptive
behavior of this illness, even if one cream is friendly for a while,
it's likely to work against us eventually, leaving us to find yet
another bottled balm.
Whether demos, trial size or jumbo-king, we'd be wise to do a skin
patchtest before slathering anything on. To patchtest a product,
apply just a drop of cream to an area of your body you can bear
not to wash for a while and wait for a skin reaction. Generally,
experts advise leaving it there for up to three days but we may
spot, blotch, itch, blister, peel or ooze sooner. As for the potency
of sunblock, 40 SPF is our best bet and those that resist moisture
will endure our hot flashes best but they'll still need to be frequently
and smoothly applied, to stay on the safe side. Remember, the higher
SPF rating doesn't mean we can dare, like "mad dogs and Englishmen",
stay out in the noonday sun or at any time. Check out http://www.stormfax.com/uvtable.htm
for the (non-lupie) UV Safety Recommendation Chart.
Finding comfortable clothing that shields us from the sun isn't
easy either. Lightweight, loosely woven clothing is cool in the
heat but it isn't much of a defense so it's most safely worn indoors
or when twilight falls. Now, the American Society for Testing and
Materials has set scientific standards for the manufacture and labeling
of sun protective products such as clothing. UPF units, (Ultraviolet
Protection Factor) assess a fabric's ability to bar sunlight from
penetrating to the skin. There are three categories, classified
as Good UV Protection (UPF 15-24), Very Good UV Protection (UPF
25-39) and Excellent (UPF 40-50). So far, compliance is strictly
voluntary so it'll be a while before we can buy a whole new wardrobe
but just knowing of these new standards might help us to be sharper
shoppers.
Our eyes are just as sensitive to harmful radiation as our skin
and they're especially vulnerable to damage which might precede
eye disease such as macular degeneration, a leading cause of blindness
even in those who are healthy. The sun's rays intensify as they
reflect off bright surfaces (windows, mirrors, chrome, steel, aluminum,
snow, ice or water, the gleam in a loved one's eye - no, that's
a different danger) so any reflective surface can zap us right in
the orbs.
The safest sunglasses or contact lenses are 100% UVU protected.
Contact lenses should be oxygen permeable and the sunglasses should
wrap around the sides to block more rays. Some sunglasses have little
side flaps for even more protection and you won't get that with
contacts since they can't cover the entire eye, except, of course,
in Sci-Fi movies.
Part 3
While Canada and the United Kingdom have long offered their citizens
access to a broad range of medical services and medications, many
residents of the U.S. can't afford basic medical care, let alone
treatment for their illnesses and essential medications priced at
four times their cost in Europe. That's right, Americans are charged
quadruple prices for the same medications their friends overseas
are buying. Many Americans visit Canada or Mexico on regular daytrips,
just to maintain their medications. Amazing, isn't it, that these
drug makers are usually based in the U.S. yet brazenly jack up profits
in their own backyard and get away with it.
This is more than just unneighborly, it's outrageous when the average
American family now pays more in taxes than for food, shelter and
medical needs. Nowdays, their healthcare costs are higher then the
level of inflation or income and, with epidemic corporate greed
running amok, this gap is rapidly becoming a bottomless pit.
Most of those forced to deal with Health Maintenance Organizations
(HMO's) must pay the piper and can still have crucial medical services
denied for not being "cost effective". No matter what their illness,
they and their families can be dumped at any time without just cause
or reasonable explanation and their recourse is often limited to
an arbitration process slanted in favor of the HMO.
Those who aren't in employers' group insurance plans or HMO's wind
up paying twice as much for their care because, without company
cost and tax breaks, they must cover all their needs from their
net or after tax earnings. It's rough all the way around, especially
on those who must choose whether to pay for doctor visits and prescriptions
or buy food to eat. The effects can be devastating for the over
44 million American men, women and children who are completely uninsured,
with no safety net and a slippery tightrope ending somewhere in
mid-air.
Forty years ago, Congress investigated the pharmaceutical industry,
found it sorely lacking but wound up doing nothing about it. American
politicians, who are themselves fully insured at taxpayer expense,
have somehow managed to stall passage of a patients' bill of rights
for those less privileged. Too many legislators have wasted these
four plus decades feudin', fussin' and a'fightin' over who gets
the credit while trying not to offend deep-pocketed corporations.
Despite the excuses and partisan accusations, these well paid officials
are flinging around their latest failure, nobody loses but us.
This week, they're on the verge of implementing a plan which won't
begin until 2005 and will be handed off to tax subsidized private
insurance companies, instead of being covered by the tax-payer dollars
that are already funded through Medicare. Under one version, it's
projected that individuals will start paying about $33. each, in
monthly premiums and a $250. deductible apiece, before their coverage
begins. While Medicare makes stabilized payments, private insurers
are allowed far more financial flexibility and these figures aren't
enacted into law, so that tab can be expected to rise like our temperatures
during a summer flare.
As for medication prescriptions, 80% of each purchase would be
covered up to a cap of $1000. for the first year, then 50% covered
and capped off at $2000. for the second year of coverage. After
that second year, all prescription coverage ceases, except for those
with "extraordinary" medication needs costing them over $3,700.
a year. Prescription expenses over that yearly $3,700. will then
finally be fully covered by the U.S. Government, thanks to the taxpayers,
who happen, by the way, to be you.
An alternate plan, as of July 28th, would cover all prescription
drug costs for individuals with annual income soaring up to $8,
860 ($738.33 monthly) and couples, up to $11, 940 ($995. a month).
That might allow some folks to splurge on Fancy Feast instead of
Cat Chow, for Sunday dinner, except that full coverage won't kick
in until "catastrophic" medication needs of $4,000. a year have
already been paid by each person. Since that's almost half the projected
top individual income allowed, even Cat Chow might be over budget.
There are other versions floating around Washington but whatever
version might or might not be approved during voting in this first
week of August, it's doubtful any politicians or lobbyists are calling
you for your opinion.
You might wonder why private insurers would be chosen for this
stewardship when Medicare already exists for exactly this purpose
and has been collecting your hard won dollars for decades. If this
were brought to the people for a vote, would they choose to pay
for care from tax financed insurance companies while still being
taxed for Medicare they won't be getting? Worse, while Medicare
can negotiate lower drug costs with drug makers, private insurers
don't offer that benefit. With private insurance companies, the
bottom line is always profit so costs can always go up, allowed
services can always change and companies, having filled their coffers
at our expense, can always move on. Sounds an awful lot like the
old HMO predicament, with no practical improvement for the folks
who ultimately pick up the tab.
Another bill (S 812), in support of lower cost generic drugs, is
finally coming to a vote. If passed, that bill will close a loophole
that allows drug manufacturers to sue generic makers for patent
infringement, which keeps your drug costs inflated. Although at
least 60 senators have agreed to support this bill, strong opposition
makes it's fate and your benefits uncertain. If you're an American
and you want affordable medication plus a fair, workable health
plan to be enacted within your lifetime, visit Public Citizen at
http://www.citizen.org to send a free fax to your elected representatives.
While you're there, scroll down to "Consumer Corner" at the lower
left for more tips and tools.
Politicians are public employees and you pay their salaries, plus
provide them with piles of goodies, including new automobiles, free
gas and oil and worry free lifetime health care at your expense.
These benefits are called "perks" or "prerequisites", meaning they're
the little extras required to get anybody to run for office. Wouldn't
it perk you right up, to at least have worry free health coverage
of your own?
Our own silence can work against us in ways more dangerous than
our illness alone can; it can deprive us of recognition, deny us
our most basic rights and damage our health. In the bustling state
and national capitols, politicians have friendly meetings with drug
company and insurance lobbyists all the time and that seems just
a bit one-sided ~ shouldn't they know your opinion too?
This article Copyright © 2002 Shar Phoenix
[email protected] [email protected]
(While you're online, visit Knights of Kindness, http://www.baddteddy.com/knights/index.htm
a terrific website offering self-help links from abuse to pc virus
control. There are also tutorials for computer use, good disability
links and more to grow on ~ it's a keeper!)
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Butterfly News The Lupus Site http://www.uklupus.co.uk
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