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06-02-2009, 09:36 PM
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#1
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Plan B for Health Care? I hope not.
http://brain-jockey.com/duty-to-die-is-it-plan-b/
Duty to Die: Is It Plan B for Health Care?
May 30th, 2009 |
By*Audrie Zettick Schaller.
Some say 70 is the new 50. I say if we are not careful, 2009 may be the new 1984 and seniors may have much to worry about.
You may know our health care system needs some tweaking–you know costs seem out of control–but you’re quite happy with your own employer-provided health care plan. Maybe–despite being quite intelligent–it just all seems too complicated to pay much notice.
Time to notice. This will affect you in some way. And it’s likely to come sooner than later, as Congressional Democrats are working under a self-imposed July 31 deadline for passage of any health care reform.
Proposals from Left to Right
Proposals run the gamut and are under constant development. On the far left, we have those of the liberal bent (exemplified by Rep. Peter Stark) who, in search of universal health care coverage, carve a large role for a government-provided plan, even automatically enrolling all newborns. On the center left, we have proposals like the Democrats’ mandated insurance proposal, where a requirement to have health care would apply to individuals and employers would be required to foot more of the bill. Tax penalties apply to those who don’t comply, and the government takes on an increasing role in setting insurance rules. Somewhere in the middle are plans like Sen. Wyden’s, which recognize that the private sector must play a large role. On the center right, we have the Republicans, whose just-released proposal is heavy on consumer choice, with a touch of reality-driven government regulation. On the far right are proposals that leave total choice up to the consumer, through expanded options like health savings plans–already available to many if they hold a high deductible insurance plan.
Duty To Die
President Obama has laid out *8 principles of health care reform that on their face appear balanced, but his *3 bedrock principles leave much wiggle room, and lead with Cost Containment. I can’t argue with cost containment in principle, as a former small business owner who watched our health plan premiums skyrocket. But with Obama’s health care plan estimated to start at $634 billion and rise from there, there is extreme pressure for cost savings. I’m concerned that any effort to control costs doesn’t digress into a public policy where government makes the choices about significant aspects of our health care.
The stimulus package already included a favorite of President Obama–Comparative Effectiveness Research–designed to rein in costs to allow expansion of health care coverage for all. Used correctly, a database of most effective treatments could be a godsend to doctors and consumers alike. In the hands of a government-run health care program, it could slip into a cost-saving debacle, denying options and coverage to consumers. Some speculate that the elderly would bear the brunt of this approach.
It’s a real issue, since Duty to Die is a real philosophy, discussed in many ethics textbooks and proposed by respected academics. While some scoff that critics are misrepresenting Comparative Effectiveness Research, it’s wise to watch for the slippery slope, since some experts have specifically suggested the following:
• “..there is a moral duty to die inexpensively in healthcare contexts.” J. Angelo Corlett, Professor of Philosophy, Health Care Analysis, “Is There a Moral Duty to Die,” Nov. 2, 2004. Corlett based his theory on Paul Menzel’s theory of health care distribution (Menzel is author of “Strong Medicine: The Ethical Rationing of Health Care”)
• “Even very young children can understand that medical costs can quickly absorb money that could otherwise be put aside for college education or a family vacation, for example.” (Judith Lee Kissell, PhD; professor of bioethics)
To this genre of philosophers and bioethicists, the duty to die is social policy–based on a view that medicine can be used as a mechanism for a more equal distribution of wealth and resources.
This is a departure from other physicians who discuss this issue of limited resources. When discussing medicare funding challenges, doctor Kenneth Prager is more measured, recognizing the challenge of limited resources, but noting that the “proper approach to an aging population that consumes ever more health care dollars is not to cut their access to care arbitrarily but to develop a multifaceted approach that emphasizes patient and physician education about what medical care is helpful and what is not…”
What’s Already In Place
Worry not, you say. A federal Duty-to-Die policy would never happen. Perhaps not. The Stimulus Bill created a Federal Coordinating Council for Comparative Effectiveness Research. Original language was changed to insert words like “clinical” and eliminate any references to cost control because of an outcry regarding these issues. I agree with Media Matters that the stimulus bill never contained language dictating that knowledge about Comparative Effectiveness be used to prohibit certain treatments. HHS says that ”The Council will not recommend clinical guidelines for payment, coverage or treatment.” Specifically, the Stimulus Bill says: “Nothing in this section shall be construed to permit the Council to mandate coverage, reimbursement, or other policies for any public or private payer.” Call it semantics, but when we use the term “mandate” we usually mean things the government requires us to DO, not what they don’t allow us to do.
Semantics aside, it would be entirely possible for another government entity–tasked with cost containment–to take the data compiled as a legitimate part of comparative effectiveness and use it to craft other cost-containing policies that limit coverage. This is more tempting to invoke the tighter the U.S. gets squeezed by health care coverage costs.
Do the Math
The Council is modeled after Tom Daschle’s references to a U.K board–The National Institute for Health and Clinical Effectiveness (hat tip Betsy McCaughy at Bloomberg) which “approves or rejects treatments using a formula that divides the cost of the treatment by the number of years the patient is likely to benefit. Treatments for younger patients are more often approved than treatments for diseases that affect the elderly, such as osteoporosis.” This is known as Quality Adjusted Life Year calculations.
Couple this health care framework with statements about saving money, and we’re closer to the slippery slope.
I have a 91 year-old-grandfather who wielded a table saw last summer to help with a home project and still drove (safely…really) until last month, when a sudden onset of cataracts limited his mobility. Would a government bureaucracy tell him he couldn’t have his cataract surgery this month, because after all, it makes no sense since he’s near the end of life? If the cataracts had come on at 85 or 89, would a decision have differed? Health care decisions need to be made on a case-by-case basis.
I’m not the only one concerned with putting road blocks in place to prevent a slide to Duty to Die. A group of moderate, business-oriented Democrats just release their own proposal –H.R. 2505– to reshape Obama’s Federal Council, now composed entirely of Federal bureaucrats. The goal of their Council would be to ensure that “medical decisions remain between physicians and patients.” Even former Congressman Tony Coelho — chair of the Partnership To Improve Patient Care and certainly not a conservative–voiced his worry that cost containment will become the main goal of the Federal Council in its current form. While this legislation contains some language regarding examining health expenditures associated with a “health condition or the use of a particular medical treatment, service, or item,” the remaining language makes it clear this new nongovernmental Council would focus on patient health and well-being, and the quality of care. I view this bill as a guardrail to prevent health care reform (in whatever form) from careening off the cliff and down the slippery slope.
Health care reform is too important to leave the details to Washington without our voices being heard. Regardless of the ultimate shape of health care reform, we must make certain “Duty to Die” never sees the light of day, setting roadblocks in the way of health care rationing.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
Last edited by hutchibk; 06-03-2009 at 09:28 AM..
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06-02-2009, 09:59 PM
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#2
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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On this note, I was spending a lot of time in a hospital in January while my Dad went through a bunch of issues. Another family was there trying to come to terms with a grandmother's situation. According to them, docs brought up the cost to society of keeping her alive. I don't know all the details but..didn't like to think this family was being presented such concepts at the time.
One concept I've heard that I am thinking hard about is making health insurance mandatory. When I was in my 20's I remember having discussions with peers that said they didn't have health insurance because they were healthy and figured someone else should pay for it anyway. Obviously, so many things regarding health are beyond control and can happen to anyone, anytime. Maybe if health insurance was mandatory and therefore placed higher in priority than cell phones and Wii, the costs would be spread around and price could go down. That along with some consolidation of administration costs. I can't believe the size of a building there is for administration of an HMO I'm in that covers only part of a state. Of course...where would those "extra" people get jobs if efficiencies are put into place. Hmmmm. Gets complicated.
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06-03-2009, 10:33 AM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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If anyone would like this thread removed because of "political sensitivities", please let me know. Thanks.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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06-03-2009, 12:16 PM
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#4
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Brenda,
I just returned from a lobbing trip to DC with the National Breast Cancer Coalition Fund. I was very concerned about movement or the lack there of - to help stage IV patients within the priority of the NBCCF. I realized how different the needs of the Mets population is than the rest of the bc population. We are a new and small population and the wider world of medicine doesn't know what to do with us. Heck, some of them don't even know we exist. In keeping with the theme of "duty to die". I don't know if there is an area that will address the needs of the new Mets population living with cancer. These are the primary concerns that I voiced:
1). Compassionate use and entry into trials for Stage IV patients regardless of previous treatments. Insurance should be required to pay out of network charges if the trial doctor is not covered.
2). Chemo reimbursement should cover both pill forms and IV chemo.
3). Comparative Effectiveness - off label drug access should continue as it is the foundation of Stage IV breast cancer treatment.
4). Gamma Knife / new targeted treatments should be covered for all breast cancer patients if the treatment will improve QOL.
5). Medicare should cover meds for Stage IV patients in all states even if they do not meet age requirements.
Is the Live Strong group involved in Health Care reform? Do you know?
Thanks, Carolyn
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06-03-2009, 05:07 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I have asked and not gotten an answer from Livestrong about how they plan to fight for survivor's care rights in the upcoming debates about health coverage reform... I plan to send out another missive to them to see if they have a stance. I would think that they would have a powerful set of legs to stand on in offering a voice to this issue, but I really don't know. I am pretty terrified of any coalition that might believe in a "duty to die" philosophy, but that's the purpose of comparative research in other countries.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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06-03-2009, 07:08 PM
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#6
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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It has long been my fear that medicine will be rationed. Looking at the cost of my treatment and surgeries, I am quite convinced that under a socialized health system I would have been expendable...
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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06-03-2009, 07:36 PM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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It's a foregone conclusion that health coverage reform of some sort will happen. Cost containment has been necessary for a long time. The devil is in the details and the consideration and debate of all details is critical. Especially the details that pertain to patients who are fighting for their lives everyday. That is why this "Duty to die philosophy" MUST be brought out into the light. It is VERY real and tremendously disturbing. It is not the kind of issue that can be swept under the rug to "go back and correct later" - it is a question of the ethics and values of our society. I, for one, will not be swept away quietly.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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06-03-2009, 08:12 PM
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#8
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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I for one do not see this as political, but as a moral issue. No one is expendable and that is the way it should be with health care for everyone. If something like this ever came about, just where would you draw the line. It would be a bad thing for everyone. I hope we never see such foolishness.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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06-03-2009, 08:39 PM
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#9
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Senior Member
Join Date: Dec 2005
Location: Walnut Creek, CA
Posts: 438
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I always enjoy your posts!
Karen
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06-08-2009, 06:31 PM
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#10
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Carolyn,
I recently wrote my congressman asking why advanced cancer patients have to wait two years even to get Medicare. ALS and dialysis patients are covered immediately.
Right now I work full-time and have medical coverage, but what happens if I can't work?
Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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