Gloria in MarylandIn November of 2016, my 46 year old husband, who had always been in good health, had a severe stroke. We were told that he might not live, but he did. Months of rehab have helped him recover some of his abilities. He walks, but with assistance or a walker, and he talks, although he still struggles to find words. He has very poor short term memory and cannot make good decisions. He was my family's breadwinner, and I had worked part- time outside the home so I could be there for our 2 young teens. Now he can't function well enough to work. Now Carlos is unable to even be left alone for very long, so he goes to adult medical daycare while I work part time. All of my waking hours are focused on him and my children. Our kids help in his care, but we also get support from a paid caregiver, paid for by a Medicaid program. If we lost our insurance for any reason, especially for Carlos's pre-existing condition, my family would lose everything. If we lost even a part of the Medicaid assistance, I would not be able to work. Please save these programs.
Erin in IllinoisHad Medicaid not been an option available to my family, I would not have been able to continue pursuing higher education when my grandmother entered a skilled nursing facility and spent down all her savings on rehabilitative services following hemorrhaging caused by a brain aneurysm. I was raised by a single mother, who in turn was supported by my grandmother for much of my childhood. Unfortunately, my mother died of breast cancer in 2006, three years before my grandmother fell ill, and four years before the passage of the ACA. My mother was uninsured when her breast cancer was diagnosed at an advanced stage, and she refused treatments she feared would not only be painful, but also too costly. I wonder at times if ACA had been available to her, if she would have been diagnosed earlier, or in the very least, if she would have been spared the sort of life-and-death calculus that characterized the last months she spent visiting doctors and hearing from bill collections services.
My life course has been significantly affected by the availability of health care to members of my family, but I count myself among the lucky. At least my grandmother benefited from the existence of a safety net that not only saved and extended her life, but enriched her final years once she was placed in a quality senior living facility. She relearned basic skills such as how to speak and how to walk with minimal assistance, made new friends within her community, and reconnected with family members who could rest assured that she was provided with world class, round the clock assistance that we would never have been able to rival in a home care setting. If she had not qualified to Medicaid, I don't know how my family would have managed to provide her with the care she needed. In the meantime, I was able to finish my studies and find a stable, good paying job in downtown Chicago. I support myself and am in the process of starting my own family. I know in my heart, none of that would have been possible had I been in the position of having to care full time for my grandmother in her final years.
I hope that members of Congress will keep families like mine in mind as they move forward with health care reform. The proposed bills that have made their way through the House, and now the Senate, have carelessly promoted the decimation of many provisions and protections necessary for Americans seeking adequate coverage. I may not be a member of the political elite or the healthcare industry, but I pay taxes and I vote. American citizens such as me deserve to be a part of the conversation, and we are watching closely how well our voices are being heard by our elected representatives.
Catherine in IowaI have had to work in jobs that were large enough to include my son with a chronic lung disease from birth. I had to fight for insurance payments for all of his care from 1986 though 2009 when finally Medicaid expansion allowed him to have coverage when he had aged off my family plan and had almost completed the extend of COBRA. Even with coverage, his health costs were generally $8-12,000 per year. What options will be available for him if pre-existing conditions are dropped and if Medicaid does not include men who can't work. He is now on SSI Disability but, so many things are not covered with Medicare. This is not his fault, he doesn't deserve this lack of care from his government.
Rebecca in MontanaMy adult son needs Medicaid to afford his medicine and see a doctor to keep his mental illness in check. He cant' keep a job right now, but we are hoping with Medicaid assistance he gets the needed treatment so he can live independently. He's a brilliant computer programmer who has an illness. Without ACA, my family's life would have been destroyed. Lose our son to this illness due to no treatment? Lose our house to pay for his care? It is horrible to think what would become of my son if we can't get the needed care for him.
Emily in MichiganI'm a medical student. Because of Medicaid expansion, one of my patients, a young mother, received treatment for a rare and life-threatening brain condition, after being told by 3 other hospitals that her condition was all in her head. Her hospital stay took months, but she and her family are now on the road to rehabilitation.
Rebecca in PennsylvaniaMy daughter, Mia, is autistic. She's 4, and Medicaid helps pay for her additional speech therapy and her TSS worker at school. We're extremely worried that massive cuts to Medicaid would limit her access to services that have helped her grow and thrive. We want her to be as independent as possible someday and reach her full potential. This is not possible without Medicaid.
Katie in TexasThe BCRA dramatically & negativity impacts our family. I have a disabled 5-year-old niece, Olivia, who depends on the ACA’s ban on yearly and lifetime benefits caps as well as Medicaid for secondary insurance to cover costs of care that her parents’ employer healthcare insurance does not cover.
Olivia has a progressive neuromuscular disease called Spinal Muscular Atrophy (SMA) that has no cure and is terminal. SMA affects the part of the nervous system that controls voluntary muscle movement including the legs, arms, lungs and GI tract.
If the BCRA is passed into law, the combination of Texas waiving the ban on yearly and lifetime caps on benefits and the cutting of Essential Health Benefits (EHBs) coupled with Texas’ $1.5 billion cut to their Medicaid program will result in Olivia losing access to the only drug that has been approved by the FDA to halt the progression of her disease.
Spinraza, which was one of the test cases for the 21st Century Cures Act, is a game changer to the SMA community. However, because the drug can cost up to $750,000 a year, if a state is able to waive the EHBs & the ban on benefit caps, patients who have been on Spinraza will lose access to the drug and face a dramatic regression in their newly developed physical abilities and the rates of mortality will rise again.
Spinraza has enabled Olivia go from a baby who never achieve her physical milestones, including controlling her bowels and breathing unassisted, to being able to walk over 150 steps at a time with the assistance of a walker.
Before Spinraza, she was riddled with panic attacks because she knew she was different and was frustrated seeing her twin sister achieving physical milestones she could not achieve. But after two years on Spinraza, Olivia has turned into a confident pre-kindergartner who loves her independence and being able to participate in the same physical activities (with adaptations) as her twin sister.
Please do not take away Olivia’s independence.
Please hold hearings so you can truly understand the impact of this proposed bill and the millions of disabled people it would harm.
Margaret in MassachusettsMy mother-in-law is at a point physically and mentally where she must be moved to a nursing home. She worked hard all her life and has good savings, but her resources will be depleted within two years. At that point,she would be covered by Medicaid, which currently covers two-thirds of all people in nursing homes. The drastic reduction toMedicaid funding in the BCRA is a huge concern to our family.
Please amend the BCRA to continue the expansion of Medicaid underlying Obamacare and continue the federal funding for the original program.
Karin in MassachusettsI am concerned that people who are victims of terrorism will not get the services they need if the BCRA is enacted. A friend of mine ran the Boston Marathon in 2013, the year of the bombing. Victims of that incident required endless surgeries to save limbs, had limbs amputated, prostheses required, and many lost their jobs due to an inability to work. Without Medicaid, they may not be able to receive the treatment they needed. If this bill is passed, how many innocent victims of terrorism will die or go bankrupt after the next act of terrorism or violence?
Please amend the BCRA and/or AHCA so that all victims of terrorism or violence are covered for the 10 Essential Services mandated by the ACA with no lifetime caps.
Susan in MassachusettsI have rheumatoid arthritis,and I am on self-injected medication that I must take twice a month, along with five oral medications. The retail cost of my medications is over $6,000 a month. Because my income is low, my medication cost is covered by Medicaid although I do have a $25 co-pay. If I were to lose Medicaid now, or in the next ten years, my medical expenses would likely exceed my ability to find a job that would pay for them, and I would end up in a wheel chair or worse.
Please amend the BCRA to eliminate the proposed cuts in Medicaid and require that prescriptions be offered as a required Essential Service. I understand that 45% of the $800 billion-dollar tax cut being proposed in the Senate bill will go to people earning in excess of $850,000 per year. I have not heard any of them claiming that they need to put me and others like me in wheel chairs or worse so that they can get a tax cut.
Pam in MassachusettsIn the 1960s, beforeAmerica had any kind of universal health coverage, my grandmother was diagnosed with bladder cancer. She was operated on at Mass General, and every day her bill was presented on her breakfast tray. She did not have the resources to pay, and this was the source of intense anxiety. When she was sent home, she was not given any outpatient rehab services or follow-up nurse visits. When her leg started turning black, she did not seek treatment as she was still being hounded by the hospital for her previous bill. By the time she was seen, the leg had gangrene and ultimately had to be amputated.
The kind of rollbacks of coverage embodied in the BCRA would mean a return to this kind of tragedy for millions of Americans
The BCRA needs to be amended so that the 10 essential services continue to be covered without crippling deductibles or any lifetime caps.
Naomi in MassachusettsThe 50-year-old, self-employed woman who cleans my house once a month is a true professional. She has been cleaning houses and doing housekeeping for 20 years. As a result of her labor, she has injured her back and shoulder. She must limit the hours she can work. She is not disabled, but her prospects are very limited. She is very independent and proud of her self-sufficiency, but she is vulnerable. She has no other marketable skill.
Medical treatment,including physical therapy, has made it possible for her to continue working despite her physical vulnerability. Her annual income is below $40,000. Without governmental assistance, she would not be able to afford insurance. (She lives in a shared apartment with shared bathroom, not exactly luxury for someone who has worked hard for over 20 years and is approaching old age.) Without insurance, she could not get the therapy that enables her to keep working. And, of course, she would not have access to medical care should she develop any other medical condition, which is likely for someone her age.
Our uncertain economy and its lack of security for all workers means that any of us could lose sources of income at any time. The human toll in illness and anxiety is terrible. A wealthy country like ours should provide a better floor of security for its citizens. I propose as an amendment that by 2030 we will complete a transition to a national program of Medicare for all.
Meanwhile, I urge that the BCRA be amended to require that rehabilitative and habilitative services be included as a non-waivable essential service. Thousands, if not millions of people’s work prospects depend upon the availability of physical therapy after they are injured or struck down by illness. Cutting the requirement that insurance and Medicaid provide these services, or increasing deductibles to effectively make them out-of-reach,is short-sighted and ultimately costly for the entire nation.
Lydia in MassachusettsA close friend's daughter has had multiple hospitalizations and outpatient treatment for ulcerative colitis. As part of her treatment she was prescribed prescriptions for pain under a doctor's care. When she was in her early thirties my friend’s daughter developed an opioid addiction.
Opioid addiction is now so wide-spread that more people in the United States die from overdoses than from car accidents. People with opioid addiction often face a long costly course of care, but they can lead happy productive lives if treatment is available, and their condition is not stigmatized.
Reducing Medicaid by 25 percent will devastate the recovery prospects of many opioid addicted Americans and impair the ability of the many wonderful organizations and agencies that work with them to function.
Trying to disguise the horrendous impact of Medicaid cuts by creating a $2 billion (or even a $10 billion) dollar opiate fund does not begin to address the issue. Even Republican Senators have estimated the real cost of fighting the opiate epidemic to be more than $40 billion without Medicaid cuts. The $2 billion proposed in the Senate bill is less than a single fine levied against Google for allegedly skewing its browser search results.
I propose that the BCRA be amended so that Medicaid funding is NOT reduced, and that the BCRA, like the Affordable Care Act, cover opioid related treatment and other substance abuse treatment under all insurance policies. Eliminating a requirement for EssentialServices that includes substance abuse treatment or rehabilitative care is cruel to the hundreds of thousands of Americans (to say nothing of their children and families) who have a chance at a happy and productive life with supportive treatment.
Nancer in MassachusettsMy own child and my friends’ children have needed unanticipated health care ranging from asthma interventions to in-patient treatment for mental health issues or eating disorders, to neuroblastoma that required two bone marrow transplants, to emergency heart surgery. In each case they were lucky enough to have parents with employer-provided insurance that covered the services that they needed and provided other support services from their savings. However, there are at least as many children in families that need the same services but do not have comprehensive employer-provided insurance or an emergency savings fund.
Dr. Fernando Stein, President of the American Academy ofPediatrics has noted that the Senate bill includes misleading so-called ‘protections’ for children with medically complex health issues by purportedly exempting them from certain Medicaid cuts.”
Paying lip service to certain children through “carve-outs”does little protect children’s coverage when the funding of the program providing the coverage is cut by 25%. If you don’t think 25% is a lot, imagine that four kids in your children’s school contracted an illness and the principal informed each of the parents that one of the four children would not receive the treatment required to recover.
Stripping the Medicaid program of hundreds of billions of dollars and transferring responsibility for health care to the states through inadequate block grants will force states to chip away at coverage for needed services and/or fail to adequately cover children living in poverty who do not have complex health conditions. In other words, the Senate and House bills as currently constructed are forcing states to play “Sophie’s Choice,” with their children.
Medicaid currently allows a college student with cerebral palsy to live independently. Medicaid pays for a toddler’s wheelchair, and as he grows over time, it covers the next one and the one after that.” The damage that will be done if Congress fails to provide adequate coverage for children and teenagers with complex and normal health issues will be incalculable.
I urgently propose that the BCRA be amended to maintain current Medicaid funding levels (or increased if that is appropriate) unless and until it has been demonstrated for three consecutive years that all ten essential services defined in the Affordable Care Act can be provided to everyone who would qualify under current Medicaid rules.
Amy in MassachusettsI have End Stage Renal Disease and for the last two years I have been receiving dialysis treatment 3x/weekly at a local clinic. I am seeking a kidney transplant as an alternative treatment. I am over 65 so I was already eligible forMedicare, but I am not eligible for standard Medicaid coverage. I have obtained secondary insurance to cover the 20% that is not covered by Medicare for these treatments, and for doctors’ visits and other services that are required in conjunction with my treatment.As a renal cancer patient, I also qualify for certain Medicaid Assistance. If any of the services for which I qualify for Medicaid assistance, such as payment of my monthly Medicare premium, prescription Extra Help, Health SafetyNet for inpatient care, and subsidies for health care transportation were not available any more, it would be impossible for me to continue treatment. I will die without dialysis. That is a certainty, and with good treatment,I may be eligible for the transplant.
If there were caps on medical coverage or caps in my secondary insurance, I could be unable to continue with dialysis or be eligible for a transplant. I worked most of my life, and so the amount of Social Security I earn from the contributions I made, surpasses the income requirements for eligibility for full Medicaid. Even with the assistance I now receive, I cannot meet monthly expenses, so I can only imagine how impossible it would be if Medicaid subsidies were not available in the future.
I request that the Senate Better Care Reconciliation Bill be amended to make sure that everyone across the country has insurance for pre-existing conditions with no caps on treatment for all of the services required to treat a life-threatening illness or acute care.
I also request that people of any age or severity/longevity of illness not becharged higher premiums or deductibles for private insurance than they were charged under the Affordable Care Act or be denied coverage because of a pre-existing condition.
Orien in ColoradoI have a lot of loved ones who are likely to be negatively impacted by ACA repeal. My Aunt Kimelise depends on Medicaid for her health care and has a preexisting condition. My sister and her husband both had cancer as children (preexisting conditions) and are trying to start a family--ACA repeal would mean that maternity care is no longer required to be covered. As older Americans, my mom, dad and grandfather will see their premiums rise.
Barbara in MassachusettsIn December of 2016 my daughter was rushed to the hospital unable to breathe and had to have an emergency tracheostomy placed. She spent 9 weeks in a hospital facility finally being able to be discharged for home. Upon discharge she had to have complete overnight nursing care and to this day continues to have night nursing care. She still has the tracheostomy in place, Medicaid has helped tremendously they covered not only her Hospital stay but all of her medical supplies she has needed since being discharged. If we were to lose this coverage I don't know where we would be she would not have survived and would not have continued to flourish as she is now. Please vote no on Trumpcare!
Naomi in MassachusettsMy youngest daughter, now forty three, was a ‘blue’ baby, i.e. she was born anoxic. Either she had a stroke in utero or it happened while I was giving birth. Fortunately she was able to be immediately revived, but had some developmental issues subsequently.
Yosano, as her father uniquely named her, was born just in the nick of time to benefit from Chapter 766, Massachusetts’s implementation of the Individuals with Disabilities Education Act (the IDEA). For the very first time in history the possibility of some educational justice for kids with disabilities was in reach.
From age three and a half till she was twenty two, she was armed annually with her Individual Education Plans (IEPs). Through this she was able to access both physical therapy, which helped her greatly with tremors, ataxia, and generalized weakness, and speech therapy, which helped her, again greatly, with her receptive and expressive aphasia.
At first she was mainstreamed in a regular classroom, and learning that was tailored to her needs was outsourced, meaning she could be part of all of her peer group. Sadly that ended when she was seven when we were forced to accept the school’s moving her to a segregated “special needs” classroom. Throughout all of her school years, if and when learning was being offered (and it wasn’t always), Sano was an eager and delightful student.
Her labels were cerebral palsy, which is a one size fits all diagnoses for brain damage, and mild to moderate developmental disability. Her strengths were her willing spirit and grit: She was going to learn no matter what!
She left school at age 22. Two years prior to that, at yet another IEP meeting, she heard the vocational high school’s job developer/coach pontificate that she would never be able to work in the community. Since she’d already had two years in a school sponsored ‘workshop’ setting, she decided that yes, she would. So that very same week she went out and found herself a job and proceeded to work there from ten to twenty hours each week for the next four years. (By the school way, the school claimed this as a “slot” and many students subsequently worked there.)
When Sano was 26 my own disabilities caught up with me and I was no longer able to provide a home for her. She moved into a group home which served mostly older folks who had finally been “discharged” from the horrid “Fernald School”. (read The State Boys Rebellion by Michael D'Antonio, for an interesting account of this place.) She didn’t like it, she wanted her own place. So she self-advocated for four years to be allowed to get a Section 8 and her own apartment. “No, no, no and NO”, were all she ever heard until we located the right resource, Deputy Commissioner for Developmental Services, Jeff Keilson. Jeff said, “YES, WHY NOT?” She got her Section 8 within months, and her ISP (annually mandated service plan) was amended with a Medicaid Waiver to ensure that she would get adequate supports to make having her own apartment work. And it has, and she has. As a result Yosano has continued to work, to grow intellectually, and to contribute.
If the Medicaid Waiver had not been attached, her dreams and her abilities would never have been able to come to fruition. Now, the supposed “representatives” in Washington are considering taking away these types of supports. Yes, I agree that Medicaid, along with the whole “medical industrial complex” needs to be overhauled. But thrift is understanding that subsidizing autonomy and not institutions (among which most people include group homes) is the most viable method available. Thrift is built by getting the word out that continuous community supports work, and not build by denying services to people whose resources are already marginal.
If I could hold a parade every day for my daughter, I definitely would! I am so proud of her I could burst. My personal belief is that housing, health care, and education through the level of doctorate ARE human rights. Many countries with very stable economies, countries that are winning the competition in science, are in agreement. But whether or not you share my understanding that we can and must offer these to all our residents, you can understand the story I told you, and the catastrophe killing it would produce.
Finally, I have to leave you with a word about Sano’s future. I am almost seventy. Her father and her many siblings along with him pretty much abandoned her when she was fourteen and it became apparent that she would never ‘outgrow’ or ‘overcome’ her developmental delays. While she has developed strong friendships, as have I, there is no one who would provide care for her should these be taken away, as is being proposed. She would become fodder for the group home or, even worse, a nursing home. This would be a terrible waste, for her, and for everyone else. Please vote no on this pernicious plan!